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Low dose Naltrexone

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

  1. Diva55

    Diva55 Member

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    Hi Aquarius

    I had a quick skim through the link. I think Amy is quoting side effects from Naltrexone and not LDN.

    I maybe wrong on her concerns but that's how I see it. But I was confused with her comments on glutamate as well...nothing new about me being confused though! If you find anymore info on this can you let me know.

    Hope you're doing well. Are you thinking of trying LDN soon?

    Best wishes
    Diva
     
  2. Jenny

    Jenny Senior Member

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    Hi Snowcat

    Thanks very much for taking the time to look that up. Perhaps the metenkephalin reduces Th2 cells, while beta endorphins increase them, but overall you get a better balance. I'm probably talking nonsense - I know next to nothing about all this!

    Although Medical Hypotheses has a theoretical and conceptual focus, the articles do draw on empirical work in peer reviewed journals. You can look them up in Pubmed. The paper I mentioned cited empirical research which showed that beta endorphins led to a shift to Th2.

    Jenny
     
  3. Diva55

    Diva55 Member

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    Vitamin D & LDN

    I was wondering if anyone had come across any articles on why Vitamin D is important when taking LDN. I've skimmed a few LDN forums and people talk about taking Vitamin D but not why.

    The Scottish Conference in April has an agenda item about Vitamin D & LDN but no details on this.

    I only take a low dose (400iu) of Vit D when I remember but wondered if I should look at getting a higher dose of this.

    If people are taking Vitamin D - what doses are you using?

    Many thanks

    p.s. I've now moved my dose of LDN from 0.1ml to 0.25ml!
     
  4. Diva55

    Diva55 Member

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    LDN Update

    Hows everyone doing on LDN? very quiet on this thread.

    My update.
    • I restarted 11 days ago on 0.01ml, a tiny drop (under advisement from the LDN Research Trust).
    • I raised the dose to 0.25ml after 6 days.
    • Tonight Ill try 0.5ml

    I learnt I have a virus causing a bad throat, tongue lesions, candida on my tongue, rashes on my hands.

    Im wondering if this is a co-incidence as my GP said. Ive been reading various LDN boards saying that LDN can initially stir up bugs & candida. & IBS. However my dose has been very small for a short period so maybe it was a co-incidence.

    I also read that old pains that have previously been resolved can be stirred up as the system detoxes and bugs / viruses etc are being repaired. Apparently you're supposed to work through it and if too bad reduce dose for a few days but don't stop it as it evens out. This will of course be hard to deal with if you are already suffering with bad pains!

    Cons:
    • Ive had small bits of stomach cramping & nausea but nowhere as near as bad as before.

    • Ive felt a need to go back to bed but this could be good thing as the body needs to heal. Some boards suggest you should go with the flow on naps as LDN can help with repair during the downtime.

    Pros:
    • Ive had bad sleep patterns for years. Go to bed at midnight and never been able to fall asleep till between 4-6am even though I take Lyrica. I found with LDN my eyes started drooping after being in bed for an hour or 2 and I fall into a deep sleep. Ive slept for about 6 hours and got up much earlier than Ive done for years. I feel as if my circadian cycle is being re-set which is a miracle to me!

    • Ive had some very vivid dreams which is again new to me.

    • Ive had some burst of energy with less pain allowing me to do more things (like gardening & cleaning) but Im reserving judgement on this as FM allows you small bursts of remission.

    I know these are very early days and very small doses but for the moment Im happy Im able to tolerate it to allow for a trial.

    Ill give updates as I increases doses. I hope people will continue to post their progress & reactions as it all helps form a picture on LDN.

    Best wishes to all
     
  5. dancer

    dancer Senior Member

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    I'm back to 1/2 of a 4.5mg pill each night. When I took a whole pill, my IBS seemed worse, and I was napping a LOT...deep, exhausted in-and-out naps throughout the day. When I went back to the half-dosage, tummy issues improved, sleep has been fairly good, and I'm having more hours out of bed each day. I definitely (after the initial sleep disturbance) have seen improvement in sleep quality - remembering dreams, feeling somewhat restored by sleep by taking LDN. Hooray!

    I can't say for sure that my recent improvement in hours of function is all due to LDN, because I also started RichVank's Simplified Protocol, and after a few weeks on that, my muscle recovery (from gentle pilates or yoga) and overall energy subtly improved.

    I'm cautiously optimistic at the improvement. I've had some "almost-good" days in the past that didn't last.... so I'm just taking each day as it comes. This week has been one of the better ones I've had in awhile. :)
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'd guess that isn't enough D3--just from the general health standpoint. My doc has me taking 5000 IU daily and this brings me to the recommended levels in blood tests. D3 is very important on a lot of fronts. I'm sure there is a D3 thread in here somewhere, but it is also important for immunity. Immunity. I found this on a quick search. It also talks about the recommended dosages being way too low.

    http://www.vrp.com/articles.aspx?ProdID=2130

    Scientists have linked various aspects of immune health to a Vitamin D3 deficiency. Vitamin D3 regulates T cells, which are important to the functioning of a strong immune system. Vitamin D3 acts as an immune system modulator, preventing excessive expression of inflammatory cytokines and increasing the killing efficiency of macrophages. In addition, it dramatically stimulates the expression of potent anti-microbial peptides, which exist in immune system cells such as neutrophils, monocytes, natural killer cells, and in cells lining the respiratory tract. These Vitamin-D3-stimulated peptides play a major role in protecting the lung from infection.13
    In addition, Vitamin D3 deficiency may influence development and progression of various autoimmune diseases."


    I don't know of any articles specifically about LDN & D3--but then I haven't looked!

    Hope that helps.
    Sushi
     
  7. oerganix

    oerganix Senior Member

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    I'm still doing 4.5ml and I discovered 4.5ml (if you're doing LDN by dissolving the pill in water) works out to exactly 1 teaspoon! So, no more drawing up that 4.5ml in my syringe-without-the-needle. (pharmacy didn't have an eye dropper!!!) I can just measure it out in my teaspoon measuring spoon for cooking (not from the silverware drawer) and dump it into my mouth.

    Yuck! It's very bitter, but it's over in a second and easier to clean up than the syringe and the glass that I had to dump the solution into in order to get the syringe into it.

    I may have provoked some immune responses, as others have reported doing. I got a cold for the first time in decades and have felt like death warmed over for a couple of days.

    BUT, I still sleep better than I have in decades, am remembering some dreams, some of them erotic, heh, heh, heh, and I have slightly more energy than before. Worked in the garden without turning into an ogre afterward. And that was on a day of 99 degrees F, heat index of 105. I think that was around 35-36C for you Celsius guys. Extreme temperature intolerance is also something I've long suffered from, so this is a meaningful change for me. We'll be having another month of hot, hot, hot, before it begins to rain, rain, rain, so I'm relieved not to be suffering from the heat like I did last year. Could be I'm just getting more acclimated, but I never got acclimated to the freezing cold of yesteryear, so I think it's better temperature tolerance.

    I've also started doing antibiotics, planning on doing them for a month. Clindamycin and amoxycillin. My severe back pain went away while I was on the Marshall Protocol and has been creeping back in the 3 years since I quit it, so I'm going to see if a short course will rid me of that again.

    My startle response and overstimulation by noise have improved a great deal, too. I have mango and avocado trees in my garden, and so does my neighbor who has zinc (corrugated metal) roofs. When the fruits fall off the trees, some of them hit the roof with a loud bang, day and night. Lately, I don't even hear them at night, let alone wake with a start, heart pounding, etc. I still do my "mind over matter" routines, that is, telling myself to be "neutral" on negative stimulations like this in the daytime, but my body is really reacting differently, too.

    Semana Santa/Easter Week is coming up next week with all the fireworks, parades with marching bands and a generally carneval atmosphere with lots of rum and spirits being consumed, so my newer, healthier response is going to get tested....over and over and over.

    The strange headaches, only on the left side, with migraine-like visual disturbances, haven't reappeared in at least a week, so I hope that's the end of that. They started after I started on LDN, so I'm assuming they were related somehow, but who knows.

    I've skipped my afternoon nap about half the time lately, or only rested, instead of falling asleep and being too groggy to get up until after nightfall. That tells me in another way that the sleep I'm getting is of better quality. Even after coughing and sneezing one whole night, I felt pretty good by morning.

    I no longer have the stomach aches I had upon starting LDN, either. And my appetite has reduced, and I've lost a few pounds, and that's a good thing, as I have gained weight with CFS/ME, unlike some of you who have lost it. So maybe my hormones, ie thyroid, are working better, or maybe it's just that I'm a little more active.

    Oh yeah, one more thing...I did the no flour, no dairy for a week and didn't notice any improvement on anything, so I'm back to yogurt, cheeses and milk in my coffee. I avoid refined flours and all sugar, already, and generally either eat corn tortillas or whole wheat bread or whole wheat crackers. I use stevia in my hot chocolate or cold chocolate milk, as in my world, chocolate is a medicinal herb.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Just a note: on another thread (can't find it--search engine blues! :confused:) Someone posted that while on LDN their NK cells (natural killer cells) increased dramatically.

    This fits my experience (though I have not had them tested). I now get the occasional cold, etc.--an unknown for the past 10 years. My immune system is actually dealing with a sinus infection/laryngitis right now. Before it would just cozy up to bugs instead of attacking them.

    Sushi
     
  9. Jenny

    Jenny Senior Member

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    Good to hear all the encouraging reports!

    After taking a break from LDN, because of worsening symptoms, I started again 4 days ago on a reduced dose of 0.5 mg. I haven't felt any better or worse so far - perhaps I'll increase the dose tonight.

    When I first started a had an odd rash about a week in - a burning, swollen itchy rash on face that disappeared after one hour. I put it down to the LDN. But during the time I was off it I had that same rash two days running. So what's going on? Never had a rash like this before. Perhaps the LDN was having a longer-term effect, or perhaps it has nothing to do with it.

    I've got the liquid LDN now. Anyone know how to measure very small amounts like 0.5 or 1.0 ml? How much would a dropper contain?

    Jenny
     
  10. Diva55

    Diva55 Member

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    Hi Dancer
    4.5mg is a LOT to start with! From reading other message boards , it seems starting very low & working up slowly is the best way to go.

    Saying that we are all different and Ive read some people jump in on the highest dose and do well.

    Seems that improved sleep is the common thread in the improvements here.

    Im also on the Richs Methylation Protocol as is Jenny I believe.
    Ive decided to stop Methylation for the moment whilst my body adjusts to LDN as I dont want to confuse the two.

    Its great you are doing well on LDN and hope it continues.
    Best wishes
    Diva
     
  11. Diva55

    Diva55 Member

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    LDN Liquid Measurements

    Hi Jenny
    I wrote about reactivation of old viruses/ bugs etc in another post which seems common when starting LDN so your rash could be that. LDN may have stirred up a bug to the surface. Seems to fit what Ive read and also my own evidence of the rash on my hands as well as the mouth & throat problems I have.

    Im not one to drive on through reactions as Im very cautious. But Ive been fairly well convinced that in taking LDN that this is ok for me by reducing doses. I'm not advocating that this is the approach everyone should use as we must take any reactions seriously.

    With the liquid LDN you need a plastic measured graduated syringe which comes with a little tube to put in the bottle & attach the syringe to. The graduations allow you to measure from the 0.1ml up to 4.5ml.

    I got mine enclosed with the liquid from Dicksons. Did you get yours from them?

    You could ring Dicksons for one or go to a chemist and ask them for one.

    Good luck with the liquid
    Best wishes
    Diva
     
  12. Jenny

    Jenny Senior Member

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    Thanks Diva

    No Dicksons didn't send me a syringe - didn't think of getting one from the chemist :confused:

    Hope you're doing OK.

    Jenny
     
  13. Diva55

    Diva55 Member

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    Vitamin D

    Hi Sushi
    Thank for that link very informative.
    My GP wont test Vitamin D levels as he said I dont have the profile for low Vitamin D or something like that. I cant remember his exact words. I guess thats why Ive been cautious of taking high doses.

    I think this is the thread you were referring to:

    http://www.forums.aboutmecfs.org/sh...ates-T-Cells-New-Research&highlight=vitamin d


    Im guessing that as LDN may stir up old bugs / viruses / pains etc that having Vitamin D on board may help balance the immune system?

    If I come across anything specific to Vit D & LDN, Ill post it on this thread.

    Thanks for your help I may order some stronger Vitamin D as a trial as its cheap enough.

    Do we regard all our current new bugs as a good thing maybe!:D I know this misery of having a virus so I hope you recover from yours soon.

    Best wishes
    Diva
     
  14. Diva55

    Diva55 Member

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    Hi Oerganix
    Thanks for your full update.

    Very inventive measuring out LDN with the teaspoon! And great you can tolerate 4.5ml. I tried 0.5ml and had an awful night with it.

    Another one with a cold / virus! amazing that LDN can stir things so quickly.

    Those are great good reactions you are having especially having some more energy. . Interesting about the temperature control I suffer badly with feeling cold all the time so Im hoping LDN can help with that.

    Sounds wonderful having mango and avocado trees in your garden but having them bang on the roof all night would frighten the hell out of me too.

    Erotic dreams all the LDNers will turn into porn stars!!:angel:

    Good luck with the antibiotics. I hope your great progress with LDN continues, it's very encouraging for me.

    Keep us up to date.

    Best wishes
    Diva
     
  15. valia

    valia Senior Member

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    Hi All, I'm waiting for my LDN to arrive from Dicksons, doc has prescribed 3 ml, he wasn't sure whether it would help me or not, but assured me it could do no harm.

    I have weird dreams already, I'll be able to write horror movies on LDN :eek:
     
  16. oerganix

    oerganix Senior Member

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    Some LDN users have reported reacting to the fillers in capsule LDN, so maybe your response will be different using the liquid. Hope so.

    In some drugstores/pharmacies, there is a section on baby care where they sometimes stock an "eyedropper", don't know what you call it in UK, but it's a small plastic tube marked off in ml, with a squeezable rubber or plastic bulb at one end, so you can suck up the liquid from the bottle and the squirt back the excess until you have the right amount in the eyedropper. The pharmacy here didn't have eyedroppers so they suggested a disposable plastic syringe, needle and all, which I threw away. It is marked in ml, up to 5ml, and I just use it without the needle.

    It doesn't seem like the exact amount is crucial with this drug, except maybe for those of you who are very sensitive and need to start very low and go slow.

    You could also estimate the right amount by using household measuring spoons for cooking, I have found. In US measurements, 1/4 teaspoon would be about 1.12ml; 1/2 teaspoon would be about 2.25ml; 1 teaspoon is 4.5ml. I'm assuming that UK cooking measuring spoons are in ml, so that might work for our UK cousins.

    Thanks, Sushi, for that tidbit of info re NK cells. I had read that somewhere, too, but forgot about it. I do have the sense my immune system is "waking up", but only time will tell.

    Best to all LDNers
     
  17. vdt33

    vdt33

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    LDN was like a miracle drug for me for about a month or 6 weeks. I have tried LOTS of supplements and alternative treatments and I occasionally try a new med. It is rare that I find any new med that I can tolerate or a supplement that has any effect. So I was amazed by how much I was improved by LDN. I had to really hold myself back from doing too much because I suffer from Post-exertional malaise really bad. But I just immediately had a lot more energy and ability to do things. My really severe inflammation problems got much better.

    After about a month, tho, my infections became worse (thrush, bladder, viruses) and I am still having problems with infections 2 years later, especially the thrush.

    I started suspecting I had a strep infection in my mouth, and sure enough, a round of Keflex got rid of a lot of painful lesions in my mouth. My urologist recommended half a teaspoon of D-mannose a day for my bladder problems, and I have had NO problems with bladder since I started the D-mannose 2 years ago. The D-mannose attaches to E-coli and flushes it out. I have also discovered that a supplement called Super Colostrum by Now Foods is as effective as Valtrex for some viral lesions that flare up in my mouth (probably Epstein Barr, I guess, since the Valtrex was so effective). The Super Colostrum contains Bovine Colostrum 1 gram, Larch Arabinogalactan 200 mg, Olive Leaf standardized, 200 mg, astragalus, 100 mg, and eleuthero 100 mg. in 2 capsules. I take 2 or 3 capsules 3 times a day.

    If I can get the thrush under control, I am going to try the LDN again.
     
  18. Jenny

    Jenny Senior Member

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    Thanks for that advice oerganix!

    vdt33 - reading your post, it sounded at first as if you felt the LDN had worsened your symptoms when you tried it 2 years ago after the initial benefits. But presumably you don't think that, as you're going to start again. Is that correct?

    I take d-mannose for bladder probs as well. It's brilliant.

    Jenny
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hey Diva,

    My take:
    LDN + new-bug response = :victory:

    And, I just stick an insulin syringe in my bottle of liquid LDN, and suck it up! What are the cons to this?? (I keep both in the fridge)

    I am so pleased with my new immune system--it is actually cleaning up the terrain--slowly--but it's chasing the bad guys. :cool:

    Sushi
     
  20. Diva55

    Diva55 Member

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    Hi Valia
    3ml might be too big a dose to start with but as you can read some do ok on starting on higher doses (the max being 4.5ml). I started on 1.5ml but that was way too high & went back to 0.1ml and am now on just 0.5ml.

    If you get any reactions you can't deal with just drop back for a while. Apparently you're not supposed to stop it completely as the body needs to build up with it so even a tiny dose a day like 0.1ml will keep it ticking over.

    Yes the dream part is very strange but I take it as a good sign!

    Best of luck with it and keep us up to date on your progress.
    Diva
     

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