LDN progress

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Jul 30, 2008.

  1. simonedb

    simonedb Member

    thumbs up right now

    it was a really bumpy ride the first couple weeks. I think that was because I had been on daily analgesics for years, sort of hard to quit your pain meds for 3 days and then go on LDN, it probably induced some w/d. In addition as I am beginning to tolerate it better I am finding that .5 mg is good for now, a very small dose, so the higher dose back then was also causing some trouble I think. If I keep tolerating it ok I will play with trying to raise dose but first want to just have a couple good weeks where I am at, this is the first decent week. If you werent on pain meds before it may not be as hard of an adjustment to try if anyone is pondering it.
    So far it is helping with pain as well as pain meds were and thats cool, its nice not to have to worry about taking medication throughout the day, just once in evening with this.
    I am sort of spacy now though not sure what that is about,hope I get sharper,actually sometimes I am, its pretty up and down yet.A nice effect is some things are more vibrant to me, ie when walking my dog the trees and flowers and birds singing really stood out more than usual, sounds corny but was cool.
    I found a european based forum about LDN and interestingly they recommended starting out at .5 mg vs. 3 or 4.5mg if any doubt or side effects, whereas U.S. forums were not so clear about that message at all; leave it to the americans for excess. MOre is not nec. better especially with cfids type stuff. Anyway I was glad for the validation/guidance from the overseas based forum.
    I also found that a little phosphatidyl has been a savior from rich's simplified plan for when I feel edgy, takes the edge off and I think a little folapro helps if too dopey. I am taking all of this really slow so hard to say for sure yet what is doing what, trying to isolate things at times so can tell what supplement meds are responsible for effects. I went off LDN for almost a week until midlastweek to make sure all the pain med was out of me after I had bad backlash of pain and then started in about a week ago at this .5mg and its been alright, a little better every day, and cut back on supplements til this week slowly adding in.

    Anyway I highly recommend trying LDN but if you are super sensitive start out low so you don't get turned off to it.
  2. simonedb

    simonedb Member

    my analgesic was propoxyphene/darvon, which for me was probly the equivalent of oxy haha
    but it worked really well for years and I would probly take it again if LDN ultimately isnt a good match. but I wanted to see if could find something more curative and also see if can get brain functioning up. It is cool to find something to give me a break from that, havent had good luck with that. One other med, provigil, did actually help reduce pain and need for pain med too but then it really started to mess me up, headaches, eye aches, vision problems etc and Dr cheney really warns against that one.

    yep I am hoping that my spaciness is just more backlash and clearing out. info on ldn does say you could have worsening of some old symptoms for upto 3 months. I wish I knew more about the viral component in me and LDN but I don't, but I am glad to hear it might address that. will keep ya posted.
  3. MamaDove

    MamaDove New Member

    Isn't this medicine just amazing?????

    Last nite was my 42nd dose (6th week) and although my gut is still not right, in fact pretty awful right now, the rest of me has done a complete turn around...

    Glad you mentioned the birds and trees being clearer, thought it was only me...tehe...actually I read about the 'focus factor' with LDN...Everything in life becomes clearer, as it was when you were young and not all toxic...You realize what is really in your body and how have you been living with it all this time?

    My fibro and fatigue has improved a great deal...I won't do pain meds, nor can I, so that was not an issue and having crohn's/colitis (whatever the heck it really is) puts me at a different level than most but then many are using it just for that and are doing well...

    Imagine the drugs we have taken to alleviate symptoms from these dreaded diseases and never getting to the root of the evil within us...I find this fascinating...

    I just came from my compounder and ordered him to make it 3mg/ml...Now that I am up to 3...I plan on going higher if my body will allow and I will ahve that option with the liquid...

    Glad it is going well for you...Keep it up :)

  4. simonedb

    simonedb Member

    yea, and actually thanks to you for being the inspiration and info I needed to try it.

    which reminded me that your needing to back off on dose and sharing that was helpful to hear and see and that was in the back of my mind when I had trouble. So I need to amend what I said about european forums being more helpful, your posts were great too. What I liked about this one overseas forum was that even a pharmacy rec'd starting low and I hadnt heard official mention of .5 before that but for me that has been good way to start.
  5. simonedb

    simonedb Member

    yea try to get it, it seems pretty safe to try, not much to lose
    just print out some of the research and even interviews with skip the pharmacist who is a total old school scientist and was skeptical but he became convinced by the research and all the great results he saw in clients.
  6. SnooZQ

    SnooZQ New Member

    I appreciate your observation about folinic improving grogginess. And also your report on the even lower starting doses some are using in Europe.

    I started the LDN at 0.5 mg several weeks ago & have gradually increased that to about 1 mg.

    I've had good improvement in my muscle pain with LDN, however had to move timing of my topical estrogen replacement as all of a sudden I was getting nasty bouts of tendonitis, which I think was due to the LDN potentiating estrogen.

    Am happy to report that I haven't had even a minor autoimmune flare since starting LDN -- a fairly good stretch for me.

    I haven't had any edginess at all. I'm feeling more mellow, more upbeat, less 'sloggin thru molasses' feeling.

    Haven't had the great energy boosts others have experienced. Would look forward to that.

    I did go off the LDN for one day, due to travel (not sure how to safely pack the homemade liquid)-- and found I was struggling more like before LDN. More pain, more brain fog, kinda down.

    One small complaint is that I do feel groggy most of the morning. Come to think of it, clarity hits about 30 min. after I take my multivite. Bet it's the folate. Gonna test that.

    I find the LDN really puts me to sleep in short order when I take it. Have to wonder what is diff about me comp. to folks who find it gives them insomnia. Maybe another folate thing?

    Best wishes.

  7. simonedb

    simonedb Member

    thats cool yr trying it too
    the longer i am on it the better I am with sleeping and less insomnia
    the folapro I have only tried a couple times so not real scientific
    the edginess may come from my affinity for caffeneited tea, i suspect it would be good idea to try to abstain for awhile, but havent had willingness yet
    i am groggy in morning too, but i am used to that.......if it can be weird for 3 months thats good to keep in mind
  8. cbs1234

    cbs1234 New Member

    Fellow floxie-

    How has the ldn helped with your tendon pain? Although I am much better these days, I still have enough pain in my feet and knees to keep me from participating in some of the sports I used to love.

    Let me know how the ldn has helped with the tendon and joint pain associated with the levaquin reaction.

  9. simonedb

    simonedb Member

    guess it could be a crap shoot for you to try like everything else
    I couldnt tolerate even the smallest amount of melantonin it made me more tired and bad feeling for days/weeks after using it briefly, its all so individual
    I am real chemically sensitive

    what seemed to bring on your achiness? i am not "sickly" either with flu type stuff or anything, but I did have reoccuring mono 10 years before the achiness came on (the pain came on after a surgery and neck injury...long story sorta) its possible virus could lie dormant and then you when another trauma happens, could be years later it could trigger the fm or cfs

    keep doing your research on the LDN and see if any people wiht luck with it match your symptoms etc
  10. MamaDove

    MamaDove New Member

    Hi Hon,

    Hope simone doesn't mind my directing this reply to you :)

    The LDN immediately calmed down my joint and muscle pain and relieved the fatigue quite a bit...

    As far as the tendons affected by the levaquin, I don't KNOW if I can attribute their improvement only to LDN...I have been getting relief on a consistent basis every 3 weeks or so seeing my naturopath and taking remedies as well as that special mix of essential oils I use all over my body now...I write it down for joeb, not sure if you saw it, it really works too...

    You know my case, like yours was extreme, and I never would have believed that essential oils could 'heal' like that but it has been a big part in recovery...I can actually reach up to the top shelf of the cabinet and get something off the top shelf...Can you say WOW!!! You know those tendons would never allow that in the beginning...I couldn't even lift my arms or bend my legs or move for that matter...How friggin horrible to have to think about this again...I guess I am always thinking about it...;(

    Anyway, the oils I use are 10 drops each of rosemary, peppermint and lavender in sweet almond oil (1 0z.) and rub into areas affected...The relief I found was immediate, something professional therapists couldn't even fathom cause they didn't know how to treat a floxed person to begin with...Ok, starting to ramble again...Sore subject for us 'floxies'...

    What do you think of the lawsuit?

    Thanks jam for the 1-800-law-suit contact, there is another, Reich & Binstock 1-800-217-9267

    Like I said, by the time they fight this and make the awards to those actually affected, we will all get $1.98...

    Frankly, I don't ever think they could offer me enough for dying, coming back, fighting back and the permanent damage. How bout enough for my husbands full time care...

    Okay, now I hijacked the thread...Sorry Simone...I am back on earth now...

    Have a great day~MamaDove
  11. simonedb

    simonedb Member

    hey mamadove, i dont mind at all what people post here or anywhere, its all good info as far as I am concerned! i like to learn whats workin for others. i wonder if i could do those oils, i took the alcat test for food allergies and i am not supposd to have mint and almonds gave me headaches in past so not sure if oil form safe. that is awesome its helping u though!

    jamin, i was taking grapefruit seed extract and was considering grapeseed recently but again, grapes and grapefruits are on my taboo list of foods so not sure if ok to use them in the extract form either. this alcat allergy diet thing is hard.
    i keep finding more forums on ldn though, its like infinite!today i feel real low energy though for some reason so am going to take a day off ldn and see if i need to go even lower in dose or if its just clearing junk out......
  12. simonedb

    simonedb Member

    overall thumbs up. main good point is havnet taken any med for pain (well except lidocaine ointment on neck a couple days after hit a bad pothole in car) since started this experiment at beginning of julyish (first week sometime). thats huge as hadnt gone a day without pain medication for a few years. don't even need advil/aspirin. occasional headache benadryl.

    I switched to liquid like it better no fillers and easier to control dose, only taking about .25 mg sometimes .5 (nope not 2.5 or 5) for me thats enough for now can feel it. still some insomnia stay up late but once I fall asleep sleep very deeply and long.

    My energy is pretty good but I think it could get better, I am giving this 3 months to see if any effects I dont like go away as I read one can go thru weird stuff that long, maybe its part of body shaking it out. Sometimes have really good energy but only thing I wonder about and hope it improves is how this might intereact with possibility I have a pfo (hole in heart) sometimes I have felt short of breath, not bad but sometimes it almost feels like stimulant effect like provigil or something and that kind of stuff never worked well with my heart/circulatory system or something like that because can bring on more lightheadedness or feeling of lack of 02. Guess this is up and down, somedays better than usual and somedays not, good to be taking a break from pain meds for awhile at the least.
    [This Message was Edited on 08/15/2008]
  13. simonedb

    simonedb Member

    is really the main thing it helps with, but at first I felt much worse! think it was pain med w/d and the shock of not having pain medicated. after that got out of my system and this kicked in its been pretty consistently helping keep pain down and have no desire for old pain meds on this.
    Too much caffeine with LDN though gives me that low o2 feeling like heart getting challenged so to be avoided, today didnt feel that cus took it easy on the ice tea.
  14. MamaDove

    MamaDove New Member

    I can barely type again, so this will be brief but I wanted to let you know that I had to stop the LDN for a week, I was fearful about my liver and rectal bleeding still going on...I am fighting back from whatever this is by JUICING...Again, my hubby feels that my problems generate from a bad liver and no gall bladder therefore anything I eat doesn't get digested properly, esp. fats (which I hardly eat)so he went out and got me a juicer, put me on the 'gallbladder diet' and within a day I am much improved...

    I restarted the LDN on the advice of a fellow user and my belly and leg swelling diminished overnite...Reminder that this medicine is know for attacking inflammation...Does anyone remember my comments about the 'pacmen'? It actually feels like they are eating it up...

    My left, damaged by levaquin, was acting up again the week I was off the LDN plus I had a nasty fall which I thought I got out unscathed, appaprently NOT...Fibro reared its ugly head and the prior tendon damage was screaming again...Unbearable pain...Took LDN for two nights, leg is better allready!!! Guess I will stay on it for good, I am assured of the bennies now that I have been on and off and on again...Very interesting study without me knowing about it...It's wonderful when things happen like that, isn't it?

    Meantime hubby is my caretaker again since last week..My birthday was on 8/8 and I spent it in bed...Alone :( tehe

    We spent the day talking alot about Barrowinnovations and how I agreed with her reasoning and approach on getting back to healthy again...Because I don't have a gallbladder, my body does not behave normally and needs a diet which suits me...Adding drugs and supps only make matters worse...I have stopped everything but the LDN, even my crohn's med which was making me bleed more...Geez! These docs sure do a good job of trying to kill me...

    I will now listen to my husband, the only real doctor in my life...He is making me my cucumber and beet drink right now and I am being ordered back to bed...

    After 23 years, he is a dreamboat and still a dose of unsurpassed eye candy...I am blessed!!!

    Will post again when I can...

    My prayers are with anyone interested in trying LDN, I know it's a big step and moreso troublesome to even get your hands on it but it seems a miracle for many, even people I am close to...

    Love to all, wish me luck in getting over this ugly hump soon...I want to go fishing before the snow flies...
  15. simonedb

    simonedb Member

    thx for update

    you know I don't have a g.b. either (actually that surgery marks the beginning of the end of the world as I knew it and no I didnt feel fine) (that was never my fave REM song btw but I digress)
    and I wonder how having no g.b. does make this more challenging with nutrition and supplements. there needs to be a book about that or a chapter at least.

    I thought perhaps even at that low dose the ldn might have been tweaking my liver a bit but once I switched to the liquid LDN don't have that concern so far.

    I am not on a lot of supplements right now either, most regularly vit d, quercetin and always milk thistle for my liver and magnesium, cal, zinc and c, experiment with others occasionally but I want to get normalized to the LDN before to be sure whats doing what first, sometimes phosphatidyl but its powerful. I am thinking of going to pfeiffer center to make sure exactly what supps I really should be taking.

    anyway mamadove glad you are coming out of your flareup, it is amazing how LDN helps with the pain. Let me know if you get more good info on dealing with no gb.