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Low dose Naltrexone

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

  1. Jenny

    Jenny Senior Member

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    Yes, 0.1ml is very tiny Diva! I was looking at the Yahoo group called very low dose LDN and there are quite a few people on there reporting experiences with v low doses and how even those seem to be doing something.

    I'll see how I get on with 1mg and then reduce again if necessary.

    Forgot to report something about last night's sleep - very pleasant dreams including an amorous encounter on a train with Paul McCartney.

    Jenny
     
    Tiger Lily 813 likes this.
  2. oerganix

    oerganix Senior Member

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    I've been having some ups and downs, too. Did too much on the weekend and paid for it for two days. Just wanted to sleep and sleep. But my stomach ache has disappeared and so has the left side only headache.

    Diva55, I wonder if your experiences are your immune system reactions to LDN rather than side effects of the drug. Or maybe that's the same thing....

    I'm remembering my dreams for the first time in decades. Last night I dreamed I was trying to decide between various maps and which car to buy! I interpret that as looking for "the way" to where I want to go, and by what vehicle. Both are always a puzzle with this illness.

    Wishing the best for all,
    oerganix
     
  3. Diva55

    Diva55 Member

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    I'm still nervous about even trying the 0.1ml! I'm feeling quite battered at the moment so hope to start within a few days.

    How funny about your encounter with McCartney. You know that LDN is supposed to increase sexual libido so it's starting with your dreams!!

    The LDN Yahoo group is very good for file information & various links. There's also an specific Yahoo LDN group for FM. There maybe one for CFS / ME.
     
  4. Diva55

    Diva55 Member

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    Hi Oerganix
    I did wonder about that - bugs being kicked up by my immune system. I guess I thought it was too quick which is why I put it down to side effects. But as you say it could all be the same thing. I'm doing the Methylation Protocol as well and that can kick around bugs as well so it could be the combination of LDN & Methylation.

    I've stopped both for a few days to settle everything down then I will start with my MINUTE dose.

    Sorry to hear you've been having some downs after your amazing progress. Hope it's just a blip for you. As I've said you can always back down on the dose a bit - maybe your body is not adjusting to the dose you're on.

    Isn't it strange about the dreams. I haven't been on it long enough to get those but I experienced the insomnia - wide wide awake after 45 minutes which was a shock. But I'm going to try it in the mornings to see if I can get that great wide awake when I need it!

    Best wishes to all the LDN-ers
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've got an article somewhere that shows a link between female hormones and opiate receptors. ;)I've heard that the same is true for men, but don't have any literature on it.

    Sushi
     
  6. Jenny

    Jenny Senior Member

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    I've been trying to find out more about the mechanisms behind the effects of LDN, since I've still feeling so ill on it. Have hardly been able to eat anything for weeks, and the increased pain and flu-like symptoms are terrible even on 0.5mg.

    I'm puzzled by something in a paper by Brown and Pankkrepp - LDN for disease prevention and quality of life, published in
    Medical Hypotheses, 2009.

    They cite research that suggests that beta-endorphins suppress TH1 and augment TH2 cells. Surely most conditions that people take LDN for involve a damaging shift to TH2 immunity, so we don't want to do anything to increase this shift further.

    I've put this to one of the LDN boards, but no-one's been able to explain.

    Jenny
     
  7. Diva55

    Diva55 Member

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    Hi Jenny
    I'm so sorry you are having such a bad time even on a reduced dose.

    I took a week off to recover somewhat from bad flare. I've decided to stop the Methylation protocol whilst I build up a bit with LDN.

    I've re-started with 0.1ml - just 2 days in so far.

    Maybe you could do that - take a week's break then re-start with 0.1ml for a couple of weeks to get the body adjusted?

    With regard to your question - sorry no ideas there. Maybe you could give the LDNresearch Trust a ring or send an email from their site. If you want their number PM me.

    I don't know if it's something that Rich could help answer - might be worth mailing him?

    Hope things get brighter soon.
    Diva
     
  8. JanisB

    JanisB Senior Member

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    Jenny, I second Oerganix's idea of taking a break, but that doesn't answer your question. My own experience -- I was sleepless on LDN and had to increase sleep meds (Klonopin). Stopped for over a month and restarted. Now I am sleeping like a baby and already up to 3.0 mg in less than a week.

    I did a little research. This article at Wikipedia http://en.wikipedia.org/wiki/Beta-endorphin explains that beta-endorphins tend to diminish pain but also that they are made from the same intermediate POMC that makes ACTH, the pituitary messenger to the adrenals to make more cortisol. You could have insufficient POMC which would explain the aches from insufficient cortisol as well as insufficient beta-endorphins. LDN is not an endorphin -- it only stimulates increased production, but depending upon our bodies, we can't always make more.

    Beta-endorphins tend to raise some immune functions but from what I could tell, more in acute situations than chronic ones. Check out the abstracts at Pub Med here http://http://www.ncbi.nlm.nih.gov/pubmed?term=beta-endorphins%20+immune%20system&itool=QuerySuggestion
    I also read that beta-endorphins decrease natural killer cells, which would not be so good for most of us, but that B-E is also made by the immune system cells itself. Apparently it is extremely complicated. It seems that LDN's use in auto-immune diseases tends to down-regulate the immune system. I too want to look into this further, as I need to strength my immune response rather than weaken it.

    BE goes up with serotonin and down with dopamine.... for whatever that tidbit of info is worth!
     
  9. Lynn

    Lynn Senior Member

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    I am about to give up on LDN. I have tried various doses since September. I think it builds up in my liver or tissues. If I am off the LDN for a couple of weeks, I can take a 1.25 mg. dose and feel great the next day, energetic and like I am walking on air. But when I continue to take it even at lower doses it coauses more fatigue and a weird anxiety that normally is not a system for me. I have spaced low doses (as little as .25 mg)as much as a week apart but it still seems to build up in my system.

    I have to say that this is the hardest prescription drug that I have ever tried. I believe all the people with MS that say it stops their disease progression. I want that. But I just cannot handle the increased fatigue and anxiety. I hope the symptoms are not due to the activation of some kind of virus because of an increase of immune function from the LDN. Because if that is the case, I may not be able to get back to my pre-LDN functioning.

    My husband who has been incredibally understanding and supportive over the last thirteen years of my illness now thinks I am complaining too much because of the symptom increase. So, I am going to stop for at least three months and make sure it cycles out of my body. I may try it again, but I don't know what dosage and what dosing I would do. It seems those fibromyalgia patients in the Stanford study are able to handle 4.5 mg nightly. Maybe CFS is different.

    Lynn
     
  10. Jenny

    Jenny Senior Member

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    Thanks very much Janis. It's so good that people on this board are willing to look critically and in-depth at things. I'm disappointed to find that most of the LDN boards seem to take an 'evangelical' position and are not willing to discuss the research. This is understandable, since they're keen to promote the use of LDN, which seems to work for many MS people, but not very helpful for us.

    As you say, the immune system seems to be incredibly complex. Also, I think different sub-groups of people with ME may have different problems with their immune system. So I think it may be more complicated than up-regulating or down-regulating.

    Since we don't know what's going on for us, and it's impossible for most of us to get any tests that show what might be going on, if we want to try treatments the only thing to do is try things empirically. And that's a bit scary and could be dangerous.

    Do you feel the LDN is helping you in ways other than better sleep?

    Jenny
     
  11. Jenny

    Jenny Senior Member

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    I'm sorry you haven't had any luck with LDN Lynn. There's so much hype over this drug and it's so disappointing when you have high hopes for something.

    I think I read that only some of the fibro patients in the Stanford study responded. Fibro seems to be an even more heterogeneous condition than ME so it may be helping only a particular group with certain abnormalities.

    I've email Dr McCandless, who's been using LDN for autism, with my question about its effect on TH1 TH2 balance.

    Jenny
     
  12. Diva55

    Diva55 Member

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    Well as you know I had some bad reactions to LDN - extreme stomach cramps, ithching rash on my hands, sore tongue & tongue lesions.
    My throat has also been bad & then vaginal problems.

    So I took myself off to my GP.

    Seems I have a virus which has been affecting a lot of people recently & incubates for some weeks & last for some weeks.
    He said I also have typical symptoms of a compromised immune system resulting in candida both in my mouth & other end. He said the hand rash & tongue lesions are also connected to this.

    He said it was pure co-incidence that all these things occurred when I started LDN - other than maybe the stomach cramps. Although he thinks my stomach cramping would be heightened by the combination of the virus / candida & FM.

    So although I'm feeling like hell I'm feeling a bit more optimistic about carrying on (although very slowly) with LDN.

    Jenny I hope you find your answers.
    Lynn sorry it hasn't worked out for you.

    Well I'll carry on with my tiny 0.01ml for a while but I think any judgement on it will be clouded until I get over this viral thing.
     
  13. Frank

    Frank Senior Member

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    Try the LDN therapy in combination with the following and you might get better results:
    -remove opoid peptides from your food pattern (gluten, milk, soy, spinach, fungus, yeast)
    -try: http://www.neurozym.com/en/ or something else that adds on the DPP4 / CD26
    -if you are senstive start at 0.125 mg and try to keep that going for a while + try repairing your gut
     
  14. Snowcat

    Snowcat

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    LDN Research

    You may wish to see if this book might help answer your question:

    http://www.amazon.com/Promise-Low-D...=sr_1_1?ie=UTF8&s=books&qid=1268662740&sr=1-1

    It's an attempt to collect all the research that has thus far been conducted on LDN in one place. I don't think it references the study you mention as that's a relatively new one, but there is extensive discussion of the impacts of LDN on the immune response. It is highly, highly technical, however, and was a bit over my head. But I did find the parts I could understand interesting and helpful.
     
  15. Jenny

    Jenny Senior Member

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    Diva - good that you've got some explanations - hope you're doing a bit better now.

    Frank - I've been on a gluten, yeast and casein free diet for nearly 3 months now. I do have a very small amount of soya milk, though, and occasionally eat spinach and mushrooms. I don't have any symptoms of gut probs, but of course that doesn't mean I don't have them I guess.

    Snowcat - thanks very much for the reference. The book's a bit expensive though. Does it say anything specifically about how the endorphins that are stimulated by LDN affect TH1/TH2 balance?

    Jenny
     
  16. Snowcat

    Snowcat

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    Hi, Jenny,

    I wish I had more time to look through it for you, but I'm on a deadline at the moment so I can just say this: in the chapter on the immune system and LDN in HIV/AIDS, on p 112, it says: "LDN causes an increase in metenkephalin, which increases levels of Th1 cells and reduces levels of Th2 cells." Each chapter has a full list of published studies in the back that can be reviewed for those who want to explore the research behind the author's conclusions themselves.

    Also, it's my understanding that Medical Hypotheses is a speculative journal that is not subject to peer review. They are currently going through a major shift in policy after having published an article denying that HIV causes AIDS that is seen as contributing to the deaths of hundreds of thousands of people in Africa. There is an interesting editorial about it here:

    http://www.sciencebasedmedicine.org/?p=4198

    So I personally would not give more weight to studies they publish than I would to others that have gone through the peer review process.

    Hope that helps.
     
  17. Diva55

    Diva55 Member

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    I was browsing another forum which has some good info although it's generally slanted towards MS.

    It was interesting about LDN initially stimulating things like candida which I now have.

    Some may find this interesting - if it's old news, apologies!
    -----------------------------------------
    For those of you in the first 3 to 6 months of LDN therapy, you may experience temporarily extra stiffness, headache, numbness, vertigo, sleeplessness, diuretic effect, loss of appetite, extra fatigue, etc. All of the FDA approved MS drugs are immune suppressants except for Copaxone and Fampridine(4-AP).

    Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in symptoms. Dr Lawrence writes this for MS patients but this can happen with other autoimmune diseases also, not just MS.

    When starting this LDN(Low Dose Naltrexone) therapy in the treatment of autoimmune illness, there may also be some initial transient, though temporary, increase in symptoms.

    Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain.

    Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhoea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain.

    In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS and autoimmune disease further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed.

    In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified.

    This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work
    .
    Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively "catch up" that the normal balance is restored and symptoms once again diminish and improve

    Dr. M R Lawrence
    =========

    As usual, I need to emphasize that seldom is LDN a stand-alone treatment, but accompanies other strategies their body needs, especially a healthy diet. No sugar, dairy or gluten.

    It takes some people longer to respond to LDN, and they may be colonized with pathogenic yeast and bacteria that could be slowing response.

    There is a phenomenon that happens to some people that as the immune system is shifting (usually from T2 to T1) right after starting LDN, the immune system drops and people get an infection, cold, flu, cold sore, etc. which is usually short lived. Candida tends to overgrow or a virus will flare up. These infections are usually short-lived unless something like candida and gut bacteria needs treatment.

    Are you a big bread/carbohydrate/sugar eater?
    Ever been tested for candida (yeast) or gut bacterial infestation?
    Ever been checked for hypothyroidism?

    Would you be willing to stop all casein (milk products) and gluten (wheat, rye, barley and oats) for a week and see if you feel better? A study done several years ago showed that 30% of us have some degree of celiac disease (intolerance/allegy to wheat) even though the clinical symptoms may not be obvious enough to alert most people to that. When anyone in that 30% of persons stops eating wheat, they feel a lot better. The LDN may be acting like the opioid antagonist it is and causing a withdrawal reaction from taking away your fix, even if only for a few hours.

    Try to hang in for awhile longer, and it will probably get better. These setbacks usually do not last long unless something like a yeast infection is stubborn without specific treatment.
    Dr. JM
    =====

    Q: Dr. JM or anyone- Does LDN cause candida?

    A: LDN has been noted to aggravate yeast infections and other latent pathogens, viruses, etc. as the immune system is making early adjustments. It is good to have natural yeast remedies on board when LDN is started (grapefruit seed extract, Candex, lauricidin, hi-potency probiotics, etc) to help offset this possibility. (And of course a good dietary regime that does not encourage gut inflammation which is usually the predecessor to pathogen invasion).

    Dr. Jaquelyn McCandless
     
  18. oerganix

    oerganix Senior Member

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    It's not old news to me Diva55, and I appreciate you for posting it here. It's been hard to find much information about the more recent experiences re: LDN, so if you come across more, bring it on! I really wish someone would do a large study using LDN in CFS/ME.

    I guess I'll try giving up wheat and dairy for a week or two. I don't have any gut issues that I know of, but what the heck, I'll give it a try.

    I'm still taking 4.5mg and sleeping well, dreaming, waking up with better mood and have a little more energy. I think I'm tolerating the heat a little better, too...hard to tell.
     
  19. aquariusgirl

    aquariusgirl Senior Member

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    Just throwing this out there FWIW.
    On her site, amy yasko says she is concerned about the ability of LDN to interfere with the ability of excess glutamate to induce protective opiods to prevent excitotoxin damage.
    http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=2247&highlight=ldn love hop
    I honestly don't quite understand that... I thought glutamate was a bad guy and led directly to excitotoxin damage. Guess I need a yasko primer.
     
  20. Diva55

    Diva55 Member

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    Hi Oerganix
    I'm glad you're tolerating LDN well & it seems to be helping you.

    I don't know if you're aware of these groups & sites. It takes time to sift through the information but have a look at the files sections on the message boards. You will need to join the groups.

    VARIOUS LDN MESSAGE BOARDS

    This group is quite active but it more slanted towards MS. Good information in the files.

    http://health.groups.yahoo.com/group/lowdosenaltrexone/


    This group is for FM but doesnt seem that active. Good information

    http://health.groups.yahoo.com/group/LDNforFibro/

    This is the group where I got the information from. The font they use is very difficult to read.
    It has lots of stored information on it
    .

    http://ldn.proboards.com/

    OTHER LDN SITES:

    This one was given to me by Dicksons Chemist & I spoke to the organiser who was very helpful with my initial reactions. It also has a forum.

    http://www.ldnresearchtrust.org/default.asp

    http://www.ldnnow.co.uk/

    http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone


    There are most probably more sites out there but I gave up looking as I got information overload! Hope you find some useful.

    Diva
     

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