Ive started LDN

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Jul 16, 2003.

  1. Wolverine

    Wolverine Member

    Hi all, started LDN a few days ago. It looks like im on board with quite a few of you that it makes really tired! Ive started with only 1/4 of a 1mg capsule (i use empty caps) and i go to sleep faster than usual but am very tired the next day! most of the day! feel overly relaxed but its not comfortable, like i cant funciton. to have the benefit it loos like i have to go to at least 1.75mg and man the thought of that could knock me out for the next 2 days! ill keep trying tho and see how it goes. i have provigil in my drawer and am reluctant to start it but i have to soon. maybe that'll help the daytime sleepiness. who else finds that LDN does this to them?

    Hugz, Chris.
  2. nickname

    nickname New Member

    ... Hi there Chris. Know exactly what u mean about the tiredness with ldn - I'm still on 1.5mg and have not had the courage to take it up to 3mg, - I don't think I would ever get up on that dose. I slept 'till 2pm yesterday, 1pm today!!!!! However, I just believe that this tiredness thing is positive and not negative - but I just don't like it, and it is a drain in itself. My sleep is just pure, out of this world, quality like I've never had before. I just think that is healing in itself, and somehwere along the line, it will sort itself out. Indeed, I am not as tired during the day as when I first started on it - around 4pm is where it really hits. I am likening it to prozac for the body and not the mind, but I have never been on Prozac, so I am only guessing. My body just feels so relaxed, not uptight, tense and very laid back.

    I had to stop taking Trimipramine which I used to make me sleepy, because I really was wiped out the next day. I have tried to cut back/out the Zolpidem (ambien), but I can't fall asleep without it - just get the tiredness from the ldn, but sleep switch does not kick in.

    Most certainly, ldn has been brilliant for a reduction in pain, and it's effect on fatigue, although subtle, I do believe is working. I have more clarity in the old brain box, and am spending far too much time on the computer using it, or talking on the phone. I am understanding clearly a whole lot better.

    I did read on the net a few days ago, that ldn has been used in children with autism. They said that the best responders had been those in whom tiredness was a side effect, but I have not got a clue if this is true of us with m.e./fibro.

    I am speaking with my consultant tomorrow - Friday - but thought u might like this reply to keep u going with some encouragemnt.

    Stick with it and see how it goes. I'll post some more if I find out anything tomorrow.

    BTW - hows this for coincidence - just looked up your bio and see u live in Port Macquarie - my brother in law and his wife moved there from Sydney a few years ago - left their 2 teenagers behind!!

    Best wishes

    [This Message was Edited on 07/17/2003]
  3. Goodday

    Goodday New Member

    Here is an update on 3 mg LDN.

    On 4.5 mg I felt hyper. I had some dizzyness. My energy level was more than I wanted. In the second month I went to 3 mg and have been on that amount for the past two months.

    It is still one of the best pain relievers for my general aches and pain. I still take 15 mg of Restoril at bedtime.
    I have been sleeping well. It is good not to wake up feeling like I have been "fighting a war all night."

    Recently I have been having anxiety attacks while driving. I don't know what is causing that. I have been prone to that off and on for years. I feel I have developed hypoglycemia since I have had my thyroid removed and low blood sugar may be the cause of the anxiety because it seems to happen more when I have not eaten regular meals or eat in between meals. I drink too much coffee but the craving for the caffeine lift is getting better and my craving is going down.

    I would not want to take less than 3 mg. I may bump it up to 3.5 mg when my refill runs out. Just to see if it increases my energy level and if I can tolerate it.

    At the 3 mg level of LDN I do not experience more tiredness.

    Even on the 4.5 I had a feeling of well being for the first two weeks until I began to feel hyper. At 3 mg I don't feel the depression as I had before starting it. I don't have the hyper feeling on 3 mg. I feel I don't have the excess energy though that I had in the first month.

    The doctor is having me try Buspar. There is a difference in the feeling of anxiety and the hyper feeling on 4.5 mg of LDN. I didn't want to go on Buspar, but there wasn't many drugs left for me to try. The anti-depressants made me ill, (slow and goofy.) Celexa made me so nervous and shaky. The LDN works so much better for me than any of those pills. It could be that I am having anxiety due to house hunting. I want a stable life and moving can cause anxiety, or stress.

    Some of you might be in that "well being stage." It takes about three months to get the proper dosage figured out for some people. I am happy that I started on the highest dose and worked down.
    It is suppose to work at 1.75 mg up to 4.5 mg. No more and no less.

    Ask your pharmacy if they are using corn starch as a filler.
    It could be that some pharmacies are using a calcium carbonate and it may not agree with you. Unless you are allergic to corn starch. I think my pharmacy is using the calcium carbonate as the capsule is grainy, not powder. Be sure it is fast-acting and not slow release. I am letting you know how it is for me at this time, in case anyone is interested???? Goodday

    [This Message was Edited on 07/17/2003]
  4. Wolverine

    Wolverine Member

    :) yeah thanks goodday good to know how each of us is going on it :) thanks all.

    im just finding i can hardly function in the day on it - i had a similar prob with neurontin. sleep well, but the effect carries on STRONG all through the next day. for example, yesterday i was trying to drive and my body felt so weak and my head so sleepy like my leg could hardly stay on the pedal, and when i got to the place i was going, i was sitting in the car shaking all over with weakness! i cant function like that, so i duno how long ill do this stuff for. see what appens :/

  5. Wolverine

    Wolverine Member

    Yeh! same for me! i felt a reduction in pain, and slept better, but there is no way i could function the next day! soooooooo thouroughly exhausted!!! no strength in my body. Unfortunaltely Neurontin does the same thing, and also klonopin. Klonopin is the worst for me, thats when i get that depressed breathhing - i was scared to go to sleep because my breathing kept stopping and i was so weak i couldnt get up to tell anyone - very scary night. I think that weak adrenals play a big part in those of us that these type of meds make really weak or non functional when there sposed to help us. Not enough stress hormones at the right time to cope with it, then we get exhausted - im pretty sure thats what mines from anyway. I couldnt continue the LDN because of what it did.

  6. Shirl

    Shirl New Member

    You can go to Medscape and find it under; Naltrexone.

    Hope this clears up the mystery for you.

    Shalom, Shirl

    What is low-dose naltrexone and why is it important?
    > Low-dose naltrexone holds great promise for the millions of people worldwide facing a possible death sentence from virtually incurable cancers and other diseases.
    > In the developing world, LDN could provide the first low-cost, easy to administer, and side-effect-free therapy for HIV/AIDS.
    Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for endorphins and enkephalins, including virtually every cell of the body's immune system.

    In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body's immune system. He found that this low dose, taken at bedtime, was able to enhance a patient's response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]

    In the mid-1990’s, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN.

    As of March 2001, Dr. Bihari has been treating 175 AIDS patients using LDN in conjunction with accepted AIDS therapies. Over the past 4 years over 85% of these patients showed no detectable levels of the HIV virus — a much higher success rate than most current AIDS treatments, and with no significant side effects. It is also worth noting that many HIV/AIDS patients under Dr. Bihari’s care have been living symptom-free for years taking only LDN with no other medications.

  7. nickname

    nickname New Member

    .....Chris, see my post to amorology and goodday re ldn. I think u may be right about the depressed adrenal thing and ldn making us more tired - my doc certainly mentioned that as a possible cause. My adrenals are very low functioning to the point of almost addisonian, and I have experienced extreme tiredness with the ldn. Have decided to stop it for now, will work on the docs adrenal, hormonal programme and then try to reintroduce it.

    One things for sure, we all know our own bodies so well. Just wished mine functioned a million times better.

    Best wishes

  8. nickname

    nickname New Member

    .......go to all the w's. lowdosenaltrexone that is Dr Bihari's site - ldn guru. You would have to wean yourself off the opiates before starting ldn because the ldn blocks opiate receptors, which means the two types of drug cause a conflict of interest, and ldn will not work. Is not contraindicated with any other drug except opiates.

    Best wishes

    [This Message was Edited on 07/22/2003]

    Edited; to remove URL by Moderator
  9. tansy

    tansy New Member

    you have had to stop the ldn. You are right we do know our own bodies best. If your adrenals are that low dealing with them must be a priority, I presume it's Dr H who is treating you.


  10. nickname

    nickname New Member

    .....just a real bummer - think you are getting somewhere, then, bingo, not really getting anywhere at all. I just hope this tiredness will go away in time off the ldn.

    It's also double bummer, 'cause now I have to go back into all the adrenal thing - I have folders full of the stuff - knew my adrenals were underfunctioning at midnight level, but in the 3 years since I have been on thyroid, my metabolism has been driven by Armour to the cost of the adrenals. Need to get the whole thing into balance.

    Then triple bummer, cause now I have to get a whole new education on estrogens, progesterone, etc because all of my sex hormones are non existant. I would'nt mind, but I don't have any symptoms of menopause - yet, but according to my results, I don't have any hormones. I swore I'd never go the estrogen route, but now I just don't know. I'm kinda thinking that I may try it to see what a difference it makes, and then make adjustments over to natural methods from there.

    Then fourth time bummer, cause I don't have any growth hormone, and need to make decisions about that.

    Not up to much am I, and it is all too much for me at the moment because of this gross, sticky tiredness. Yep Dr H is my consultant.

    There is one good thing though that I can pass on. Did u know there are good estrogens and bad estrogens. I've had this ratio measured as part of a complete hormone panel, and this is below par meaning I have a higher risk to female cancers. The trick is to use INDOLPLEX which contains DIM (don't ask me to type what that means - too scientific), but basically it is a supplement that contains the active ingredients to cruciferous vegetables broccoli, cabbage etc. Funnily enough, there was an article in the Daily Mail a couple of weeks ago featuring these good/bad estrogens and a new test that has been developed to test this, plus this supplement. It apparently bought the lady in questions level way up into healthy levels within three months, and her level was below mine, so I shall be doing this.

    Anyway, if u don't take the supplement, eat cruciferous veg.
    Well, this has gotten like war and peace again, so better go.

    Best wishes
    [This Message was Edited on 07/22/2003]
  11. pinkquartz

    pinkquartz New Member

    get your hormone testing done ?

    i have to get my female hormones tested as am all over the place.

    what do you intend to do re hormones ?
    this is my current project so i am interested.

    i knw nothing on the ldn so cant comment. i can absorb so much new info at any time !

    cheers, pinkquartz
  12. Wolverine

    Wolverine Member

    Its good to see we're getting some feedback on more of us trying it - yeh it seems were having different responses to it. For those doing well, IM JELOUS!! because, i know how good it is making people! like u nickname, im going to have to deal with other health issues before i can try it again, it knocked me down too hard! Its so frustrating when u THINK ur getting onto something that works and it turns out to just makes things worse :( I have had this predicament with faar too many drugs now. Also nickname, is it your am pm cortisol that tells u ur adrenals are almost worn out? my body to is functioning like it is extremely adrenal fatigued, i have all the symptoms awfully. i can barely go out because even getting ready to go out (getting dressed etc) makes me fully exhausted and all shaky and weak. What is the adrenal program you are on? whats it involve? - Chris

    Bob, thats awsome! Glad to hear it finally kicked in for you! how low does were u taking when it made u exhausted, and how long for? also, what dose was it that made u suddenly feel good on it? was it due to a dose change or just wating it out? when u were exhausted, were u just tired or totally non functional the next day? thanks.

  13. tansy

    tansy New Member

    to read of all those frustrations, the only upside is that you see Dr Hyams who will at least do something about these and do so safely. Just think though if you hadn't been to see him and had all those tests done you would have just been left to suffer the consequences.

    Thanks so much for the info on oestrogens and indoplex, I've already looked this up and will research it more thoroughly over the next few days. I didn't know about this and am convinced female hormones a probleme for me - major PE with pill, suddenly unable to fall pregnant having had no problems previously, menstrual problems that made me/cfs worse, perimenopause causing real problems. Breast cancer has occurred in my mother's family, she, my sister and I have all have had hormonal based difficulties but told our levels ok. Perhaps this and Dr Roby's theories are behind all this. Yet more research to do sighhhhh.

    I do hope you get some useful answers and useful treatments soon, when we get like this we need some hope that there is something that can be done about it.


  14. nickname

    nickname New Member

    Hi Chris......I have had the cortisol/dhea/melatonin test done by saliva in the past. This is measured over 4 times in the day starting at 8am, then noon, then 4pm then midnight. Cortisol should start high, then gradually diminish to within reference ranges throughout those times. What happens with a lot of m.e. people is that this line of measurement becomes almost flat, indicating low adrenal function and low adrenal reserve. At any time where the level goes below what is reference range, it is considered to be a mark of cortisol dysfunction. I believe that the midnight level is especially important, which they call the baseline. Mine when off the scale at this point.

    The site to look up on the web is Dr Poesnecker who goes thru the adrenal problem so very, very well. He also has a book which u can get thru Amazon. He mentions blood pressure as another way to guage adrenal function/reserve and where your adrenals are on the coping scale.

    I have just also had the 24hour urinary tests done thru my new consultant, to show all the hormones and adrenal functions, including fractionated levels of corticosteroids - it is just too complicated and beyond any scope of intelligence that I have to understand, and so I can't explain further what this detail actually means. Except to say, that my consultant said almost addisonian. Yikes.

    I just get very confused about all these tests and different methods of collecting samples.

    To be absolutely honest, my consultant is so thorough, but so confusing to my poor addled brain, that I can't take it all in. However, I came up trumps this time, because I got myself a dictaphone and recorded the entire one hour consultation, and of course, when I go thru it bit by bit and in my own time, I can understand. However, we left it that he would send me the scripts for what he recommends, because I could not make up my mind there and then on what to do. So this is what I am waiting for.

    If you go all weak and shaky, have you got problems with low blood sugar - it all certainly ties in and makes a lot of sense - yep, I have that too. Have to eat protein, carb ie veg/salad/fruit and good fat ie fish, olives, avocado etc every 3 hours.

    It sounds like u have a good doc, so hope you can get the tests that u need - have a look at Poesnecker - he's a good place to start.

    Best wishes
  15. nickname

    nickname New Member

    It was Dr H who did my hormone testing thru 24 hour urine analysis. Very detailed and very thorough, but very confusing to me - could not dive into it and look up the results because it was just way beyond me. See my posts to Wolverine because it measured all hormones and adrenals/corticosteroids etc.

    As for what I'm actually going to do, I have yet to decide. Am waiting for the scripts to be sent to me - I'm bedbound with m.e. so have telephone consusltations. I am too tired as a result of that ldn which is getting less now that I have stopped it, but is still causing me a problem.

    I swore I'd never go the estrogen route, but I think it may be a good idea to give this a three month go, which is what Dr H suggested, just to see what happens when the hormones are in balance - this is all the sex hormones, adrenal hormones, growth hormone - all of which are under ref levels, plus the thyroid which at the moment, I appear to have too much of (am on Armour). Confused? Yep that's me.

    Dr H believes in the Paul Cheney stages of c.f.s. (what a joke to call it that) ie stage 1 is where the RNaseL becomes switched on causisng problems in the immune system and then degrades over time, then stage 2 where the liver becomes unable to detoxify, then stage 3 where it becomes a neuro/endocrine problem. Each stage has a knock on effect to the previous.

    I just need a break from all of this really and then come back to it with a clearer head to make some decisions.

    Keep in touch - wishing you well
    best wishes