1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Low dose Naltrexone

Discussion in 'General Treatment' started by Cort, Jul 22, 2009.

  1. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    dosing for Aftermath

    Yes, 4.5 is max!

    I would suggest starting out really low -- .5 for example, and then just slowly working up. Some people also dose just every other day.

    I jumped ahead with dosing and got too many reactions, so I have abandoned it for awhile.

    Just because a low dose is "ineffective" that's okay at first. Just work up.

    Just my personal experience.
     
  2. Aftermath

    Aftermath Guest

    CC Security Code.

    The security code is something that more and more retailers are asking for. It is the final three digit number that should be on the back signature strip of any MC/Visa. For AMEX, it is a four digit number on the front.

    This shouldn't be a dead end for you.
     
  3. Aftermath

    Aftermath Guest

    Tablets

    Do any of these compounding pharmacies make actual tablets? It would be a lot easier to break tabs apart to lower dosing than to mix with opening capsules.
     
  4. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    security code and small doses

    Thanks, Aftermath, but that's not it. That was asked for in another part of the check out process and I gave it. I also tried it again when this other "security code" was asked for and it wasn't accepted. I have been ordering online for as long as it has been an option, so I'm familiar with the code on the back. This is something different.

    But not to worry...I think I've found another Indian pharmacy that will work. Just waiting to see if my Rx in Spanish from my Nica doc will be acceptable. If so, I hope to order tomorrow or whenever they get back to me on this. India is about the other side of the world, so it's early morning there and I may hear back before I go to bed tonight.

    Re LDN in convenient sizes, I got this email from Skip's, as suggested by an earlier poster (was it MaryLib?) (Thanks!) (In another email they said I could get my Spanish speaking doctor to tell them my Rx through an interpreter, over the phone, if I want, so I guess your doc could call it in for you. See 800 # at the end):
    > Hello Lilly,
    >
    > Naltexone 1.5mg #30 capsules costs $9.95
    > Naltrexone 3mg #30 capsules costs $14.95
    > Naltrexone 4.5mg #30 capsules costs $19.95
    >
    > That is the break down of the prices for 30 day supplies. The fedex
    > international shipping charges are roughly $55-100. We will not know the
    > actual price until we process a label from federal express.
    >
    > We have been compounding LDN for 10 years now and we only use pure
    > naltrexone powder of the highest quality and we use avicel as the filler.
    >
    > Please let me know if you have any further questions. I will be glad to
    > answer them.
    >
    >
    > Respectfully,
    >
    >
    > Rafael Davidoff, RPT, CPHT.
    > Skip's Pharmacy
    > 21000 Boca Rio Rd Suite A-29
    > Boca Raton, FL 33433
    > www.skipspharmacy.com
    > 800-553-7429


    The Indian pharmacy will ship me 30 50mg Revia/generic naltrexone for $133, with free shipping by courier, which ought to last 333 days at 4.5mg :D , as opposed to a one month supply from Skip's for about the same cost, so I'll probably do that, if the Rx if accepted. I will do my own "low dose" procedure, taken from here:
    http://www.webspawner.com/users/howtoobtainldn/index.html

    "Once you have a supply of 50 mg Naltrexone tablets, you can convert them as needed to LDN. To do so, fill a graduated cylinder with 50 ml of distilled water (unlike tap or spring water, distilled water contains no impurities that could potentially react with and thus reduce Naltrexone's effectiveness). Pour the water from the graduate into a 4 oz amber glass jar with a tight-fitting lid. Then add a 50 mg Naltrexone tablet. The tablet will mostly dissolve in about five to ten minutes. Since not all of the tablet is soluble in water, instead of yielding a clear solution, the result will be a cloudy suspension. It must be shaken each time before use to evenly disperse all the undissolved particles. One ml of the (shaken) suspension will contain one mg of Naltrexone. Use a graduated baby medicine dropper to measure out the dose you need.

    Once a drug passes from a solid to a liquid state, its shelf life can decrease dramatically. Therefore, do not make more than 50 ml of liquid Naltrexone at a time, store it in the refrigerator, and do not keep it for more than a month. The fresher the preparation, the better. Be sure to shake the liquid LDN well before using, and keep it from direct exposure to sunlight.

    The medicine dropper should be available in the infant/baby section of your local pharmacy. If you ask politely and are lucky, the pharmacist may (as a gesture of good will) give you an empty 4 oz amber glass jar. Distilled water is sold by most pharmacies, as well as by supermarkets, hardware stores, and convenience stores."


    Hasta Manana!;)
     
  5. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
  6. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    937
    Likes:
    105
    London, UK
    Compounding your own capsules (from naltrexone) is pretty straightforward to do. Not that I'm suggesting anyone do this, but just saying it is what I do. I prefer it the liquid dosing stuff.
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,122
    Likes:
    973
    Concord, NH
    To Sarahg

    I have been doing day time dosing for well over 1 month. Sorry to hear that you have trouble trying new medications! I am lucky in that regard, considering that my father is very similar!!

    I take my dose between 4:30 and 5 am before I go to work! I do not notice any difference in how bad I feel.

    I started with nightime dosage, but was going through a lot of health issues. Major burning back pain etc.. I ended up stopping it for a while, based on Drs order, and started back up with daytime dosing. I think I also started with 3.0mgs, but then started back up with 1.5 for a week or so.

    You know that you can make the dose smaller? If you have issues.

    Best of luck, not sure if it was the med or my exacerbation but I was in hell for about 1 month plus! I started this in September.
     
  8. peter

    peter Guest

    starting ldn

    hi folks started ldn 1mg. for m.e. on 18th nov and felt really ill, sore head, feeling sick,frustrated, coulnt go to work next day, but had slept ok that night,cut dose down to 0.5 (liquid form) felt not to bad after that,but no m.e. inprovement,
    5th december i increased back to 1.5mg the reaction was no where near like before but still felt a bit ropey a bit panicky and confused but I settled down,
    16th december increased to 1.25mg felt bad a few days,but still not getting benefit, infact i had started heavy dozing with d-ribose a few wks prior to ldn and actually felt my strength returning and was feeling pleased,but the ldn has knocked this on the head,so dont know what to do now, thinking of upting to 2.0 over this w/end, im on oxytetracyclne at moment so feeling sick with headache
    has anyone else had a similar experience to me and did you find that after a higher dose positive effects kicked in
    thanks for everyones posts on this good site peter
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,291
    Likes:
    6,363
    Albuquerque
    Hi Peter,

    Sorry you are having trouble with LDN. I have been taking it since August but did find I had to raise the dose very, very slowly--usually staying at one dose level for several weeks to a month or more. I doubt that upping your dose when you are having trouble with the dose you are taking, would help things. I always waited until everything was totally stable before upping the dose.

    The pharmacy that has most experience with this is, I believe, Skip's Pharmacy in Boca Raton ((561) 218-0111; (800) 553-7429). They might advise you on how to get through this and comment on interactions with other drugs you are taking.

    Hope you can get benefits from LDN,

    Sushi
     
  10. peter

    peter Guest

    hi suchi. thanks for replying I took the plunge last night and took 2mg but fearing the worst,slept well 12 till 4 then kept waking but falling immediately off again, noticed in morning i was feeling not to bad at all, felt a lot better today than for the last few, and the heady depressions i have been having were almost gone, so have had a pleasant day fo a change, so its 2mg again tonight and hope this state of affairs continues and its not just some sort of coincidence for I really didnt expect this, all the best peter
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,291
    Likes:
    6,363
    Albuquerque
    Peter,

    I'm so glad you finally had a good day with LDN. We all seem to respond differently, but for those who are helped they are often helped significantly. Keep posting on how it goes.

    Sushi
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,122
    Likes:
    973
    Concord, NH
  13. shannah

    shannah Senior Member

    Messages:
    848
    Likes:
    179
    I'm searching for a friend of mine who says she can't find an internet source to order from without a prescription. Years ago I ordered from World Remedium but they don't seem to carry it anymore. United Pharmacies doesn't ship to Canada. Would greatly appreciate if anyone has any alternate suggestions for us.

    Thanks
     
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,122
    Likes:
    973
    Concord, NH
    How about all day chemist?
     
  15. shannah

    shannah Senior Member

    Messages:
    848
    Likes:
    179
    I'll pass this onto her. Thanks so much.
     
  16. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
  17. helsbells

    helsbells Senior Member

    Messages:
    297
    Likes:
    8
    UK
    Hi everyone just a couple of thoughts:

    I haven't been taking this long enough to know for certan outcomes, but just to suggest a few things i am actually taking an ultra low dose of this drug because I have trouble tolerating it, even at a very small dose af ew things have happened some good some not so good but enough to make me believe it is effective in very small doses, not just in the stated range (I also don't take every night) Also I believe it can in some cases become less effective over time but in some people this can be remedied by a break before restarting.
     
  18. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
    The European LDN conference of 2010 will be focussed on CFS/ME as stated on The Mary Bradley show. They are also looking into having an online webcast of the conference for people around the world to watch. The dates of this conference will be April 23 and 24. April 24 will be for the general public and will be broadcasted.

    Here's the latest radio show where this is stated:
    http://www.blogtalkradio.com/mary-b...the-mary-bradley-show.mp3?localembed=download

    Here are more radio shows on LDN:
    http://www.blogtalkradio.com/search/mary-boyle/
     
  19. froufox

    froufox Senior Member

    Messages:
    398
    Likes:
    66
    Has anyone here experienced weight loss whilst on LDN? I've been on it for about 2 weeks now, and went through quite a severe detox flu/cold which I think the LDN might have partly triggered. My body felt under a lot of stress and I lost some weight as a result. I am almost over the flu thing but now it feels like the LDN is clearing out my gut too much as I still feeling like I'm losing weight and can't seem to retain food/nutrients in my gut - my stomach is like a washboard! Its frustrating as I can't afford to lose any more as I'm already underweight as it is! I'm about 50kilos/7st 12lbs and I'm quite tall at 5' 7".

    I know the LDN is helping though as I've got more energy. I've been on 1ml/1mg and increased to 2mls/2mg last night.

    Did anyone else have this problem at the start of taking LDN and if so did it get any better or worse as you continued on the LDN? If anyone did experience weight loss, did you manage to put it back on after a while?

    Thanks.
     
  20. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    I've had this problem but not with LDN. Probiotics, one hour before each meal, fixed the problem completely. It seems to take at least a week before it works completely. And I know it's not coincidence or placebo because if I stop taking them the problem gets worse after a week or two.
     

See more popular forum discussions.

Share This Page