LDN have you known anyone with good results???

Discussion in 'Fibromyalgia Main Forum' started by hensue, Sep 13, 2009.

  1. hensue

    hensue New Member

    Has LDN helped anyone with fibro and chronic fatigue? I get emails on it and most people or complaining about they cannot sleep and hurt. You cannot take anything for pain right?
    My doctor here at home said if I went on it he would not see me anymore.
    I cannot take that chance.
  2. SnooZQ

    SnooZQ New Member

    I've mentioned my experience with LDN a number of times on this forum. I've been on LDN since July/08.

    LDN has been extremely helpful to me. My family, friends, and even neighbors comment on how well I'm walking. Before LDN, I'd drag myself along using a cane or walker (flares); my gait was off due to muscle pain & weakness, as well as severe joint pain. I now walk almost every day, don't need assistive devices, and walk at a fair clip, to boot! My DH struggles to keep up!

    Before LDN, I needed to keep my activities pretty much to less than 20 minutes, or I'd hit a wall. Forget shopping and volunteer work -- I needed a lot of help with light housework!

    My energy levels have also improved quite a bit on LDN -- I shop for hours at a time, do regular moderately active volunteer work for 6 hrs/time, and garden for up to 4 hrs/time. I think it's fair to say, I have a LIFE with LDN.

    There are a number of meds that are incompatible with LDN, including opiates and opiate agonists.

    Fortunately for me, my pain while on LDN is now very infrequent and mild. I don't really have much of anything that would qualify as a flare!

    It is true that there is an adjustment period to LDN. I chose to start at a very low dose & slowly increase it. Each time I did an increase, I would have several days of mild side-effects. When people jump in at a higher dose, they are asking a lot of their bodies, IMO, and risk increased side-effects.

    LDN may not be for everyone with Fibro, but some of us are doing very well on it.

    However, since your doc has given you an ultimatum about LDN, and you do not wish to lose that doc, then by default your decision about LDN is made.

    Best wishes.

    [This Message was Edited on 09/13/2009]
  3. hensue

    hensue New Member

    Sounds like your life is so much better. I had the doctor that was willing to give me LDN.
    He lived a thousand miles away. I receive an email all the time about ldn ath cfs and fibro.
    Most of the time people are not doing well. That is where I got that from.
    You have been on it for over a year. I had read where it helps fibro the most. Is this the only drug you take?
    I hope you do not mind me asking. I keep going back to this ldn. Most people do not sleep well right? I only sleep well while taking valuim and klonopin. Can you still do that?
    You are a beacon of hope and sound wonderful, I am glad you said flare. That is the word I use when I overdo.
    I love your name!
    Take care and I am so glad you answered.
  4. SnooZQ

    SnooZQ New Member

    However, when I was adjusting to LDN & increasing doses, my sleep tended to be a little disturbed. If I had started LDN on the 4.0 mg I now take, it would have been for my body like going from 0 to 60 mph without a seat belt, LOL! I started at a tiny, tiny 1/2 mg dose. This is for a med that was FDA approved at 50 - 100 mg/day.

    I do NOT tolerate meds well as a rule. Even OTCs. Tylenol has always made me vomit, & NSAIDs (like motrin) which I used to be able to take now cause my gut to bleed to the point of anemia. My internal med doc has warned me that I'm at serious risk of gut hemorrhage if I continue to take NSAIDs. So, not even baby aspirin for me. I know some people get lidocaine patches or shots, but since my dentist can never numb me up with novocaine, I figured that route was a lost cause.

    In desperation I did a lot of research which led me to the possibility of LDN.

    The meds I do take are hormone replacements: thyroid meds, estrogen, testosterone, DHEA, sometimes cortisol. But even my need for these hormones & the amount I take has decreased some with the LDN. In fairness, I think that without the hormone replacements, even with LDN, I would not be doing as well as I am. However, I was on these hormones before ldn.

    I have another RX med, but I rarely need to use it any more -- maybe once every 6 weeks. It is a topical NSAID that I apply to my knees when I overdo & have fluid-filled "Baker's cysts" brewing behind the knees. My knee problem started at age 3 -- I was born with malformed femurs(thigh bones) & foot bones. I am 14 yrs. past recommended total knee replacement, which I haven't yet had. But -- since going on LDN I feel like I'm further from the knee replacement surgeries than I was before the LDN. Not that they are perfect, by any means -- but you get my drift here.

    I do take a multivite & several supps every day, mostly to help the knees. Fairly low doses of EPA fish oil, SamE, MSM. Calcium supps, because I'm dairy intolerant.

    My worst sleep problems arose with interstitial cystitis-type overactive bladder, which had me up to pee 7 - 11 times most nights. Up to 20 times a night during a flare (any kind of flare -- FM, arthritis, or IC). I was a zombie. Resolving that problem has taken some difficult diet changes, Estrace cream, and LDN. I'm up once or twice a night now, like most women my age (55).

    For many, many yrs -- even before fibro -- I've taken a little melatonin (1.5 mg) at bedtime. That's all I take for sleep, though I have to say, I don't do well without it.

    Before LDN, I had pain every day, which became moderate to severely incapacitating during flares. My flares were often caused by emotional stress, weather changes (esp. barometric changes), and exposure to "bugs." I also had a serious prolonged flare in 2007 when experimenting with methylation cycle supps, which led to lots of doctoring.

    I can't say why some people do better on LDN & others not. If I had to guess, I'd say that those people whose fibro may have an autoimmune component may do better with LDN than those whose fibro has nonautoimmune factors. I've got all sorts of autoimmune crap in my history. LDN research has mostly been done with MS sufferers -- MS is an autoimmune disease.

    Best wishes.
    [This Message was Edited on 09/13/2009]
  5. Debra49659

    Debra49659 New Member

    I also started LDN therapy just a few months ago. I am having better results that just Lyrica only. I can take Valium if needed.

    I would recommend it as a great method for anyone to try. I have had 0 side-effects.

    Sorry I can't write more, today is a bad day for me.

    Take Care!
  6. momof3inks

    momof3inks New Member

    LDN therapy?
  7. SnooZQ

    SnooZQ New Member

    an acronym for Low Dose Naltrexone.

    Naltrexone is an opiate antagonist that is FDA approved for addiction rehab, at doses of 50 -100 mg/day.

    At very low doses, naltrexone boosts the body's endorphin production. This has the effect of increasing energy and modulating pain. In addition, the immune system is affected by endorphins, usually in a positive way as endorphin levels rise. LDN has been and is being researched as a treatment for certain types of MS and cancer.

    At the present time, LDN is a treatment unfamiliar to or unapproved of by the majority of primary care MDs.

    There's lots of LDN info on the web, incl. entire forums devoted to the subject. For a start, though, you may want to try wikipedia: http://en.wikipedia.org/wiki/Low_dose_naltrexone

    Best wishes.
    [This Message was Edited on 09/14/2009]
  8. jasminetee

    jasminetee Member

    I've heard of LDN over the years but I don't recall hearing it helped fibromites much. I'm so glad to hear it's helping some of you. I just looked it up and I see Stanford did a study on LDN and fibro in 2009. 6 out of 10 fibromites felt better on it! Wow!

    I also read just now that LDN helps AIDS patients feel better and fight off the AIDS more. Look at this: "It's a drug already helping thousands of people battle addiction, but many people believe it also has the potential to help tens-of-thousands of patients with diseases like Crohn's, multiple sclerosis, Lupus, parkinson's and even HIV." Elsewhere on that site it says it helps Cancer. Now normally when I see something helping muliple diseases that raises a red flag, but this seems different.


    Apparently it's not patented and only costs about a dollar a day. Why would your doctor drop you if you use it? Because it's associated with Heroine users? That's just stupid. Does your doctor realize that it actually stops users from being able to get high off of Heroine? From what I've read on other sites it can inhibit pleasure from alcohol consumption too. So does this make a doctor want to drop a patient? That's very confusing.

    Here's more fascinating findings: "Patients infected with HIV had their viral counts drop radically, sometimes to undetectable levels. Their CD4 counts subsequently went up. As a result they were much less likely to get opportunistic infections and AIDS related malignancies." It also helps MS patients feel NO fatigue! That's awesome.


    Plus "Naltrexone is not addictive and does not produce any "high" or pleasant effects." What is your doctor thinking? I really want to know.


    I can't handle most meds but this is one I'm willing to try. If my doctor won't let me then I'm calling my nearest compounding pharmacy and asking them for a doctor referral from someone who will. We have a right to take what may make us better for crying out loud. You may want to try that.

    [This Message was Edited on 09/14/2009]
  9. SnooZQ

    SnooZQ New Member

    I was unable to find a doc to RX LDN for me, however my primary, an internal med doc, does know that I have self-prescribed it and take it. He has seen how much it has helped me, yet still refuses to rx it, because using LDN for fibro, or for ANYTHING at such low doses is considered "off-label" prescribing.

    As if he doesn't rx anything else off label! ... sigh.

    I guess I should consider myself fortunate that he will keep me on as a patient, FWIW. My doc's only contingency is that I need to keep getting my liver enzymes checked every yr. Which is no change from before LDN. However, there have been a few cases where people taking full-dose LDN for extended periods have developed liver problems.

    I'm not sure why other docs dump patients. I can guess:
    1) Ego issues -- more docs are being assailed by patients with ideas of what's wrong with them & what should be done about it.
    2) Income issues -- no pharma incentives if a doc Rxs LDN as opposed to the latest new drug. Also, a patient who is doing well doesn't make as many office visits ...
    3) Ignorance about LDN & unwilling to invest time to learn about it
    4) LDN isn't considered current "standard of care" for anything.
    5) Liability concerns whenever standard of care isn't followed.

    BTW, my cost on LDN is about $70/yr. for imported generic Naltrexone. If I could get a doc to RX me domestic generic naltrexone, my cost would be about $30/yr. But no doc in his right mind would do that, since I home-compound.

    Best wishes.

  10. jasminetee

    jasminetee Member

    Hi SnooZQ,

    I love your name too! Thanks for explaining about where doctors are coming from for me. Geez! That is sooooooo messed up. Something is really wrong. Yeah, like they never Rx anything off-label for our DDs! What a joke.

    So you're getting it much cheaper than a dollar a day. Wow. How do you home compound?

    Because of my severe CFS I probably can't handle it but it sounds so great for my severe FMS. You have FMS and not CFS right?

    Oh here's more about Stanford: About the first LDN study with 10 FMS patients: "We recognize that chronic pain hugely impacts not only patients but their families and friends as well. Often people seek out the newest research and treatments in the hopes of reducing their pain and suffering. While we are excited about the results of this study, we believe some cautions are in order in interpreting our results. This study was very small; only ten fibromyalgia patients were tested. Therefore, the results must be replicated on a larger scale, with more people. There are also a number of questions to be answered regarding proper dosing, interactions with other medications, and whether or not beneficial effects are maintained over a long period of time.
    Consequently, this study should not be interpreted to suggest that LDN is a well-accepted treatment for fibromyalgia pain and fatigue. Although we are pleased with the results of this pilot trial, it is still too early to say how effective LDN will be for individuals not in this study.

    What’s next?

    We are currently running a double-blind trial and are enrolling participants for that study. We expect that study to be finished by the end of 2009. Individuals with fibromyalgia who are close to Stanford University can participate in the trial. More information can be found at: http://snapl.stanford.edu/ldn/"

    "We are no longer recruiting participants for this study.  For more information about alternate studies in the lab for Fibromyalgia, please see our currently active study "T3 for the Treatment of Fibromyalgia". Too bad but cool about the T3.

    Stanford pulls through for us!


    [This Message was Edited on 09/14/2009]
  11. SnooZQ

    SnooZQ New Member

    I have diagnosed FM, as well as a lot of autoimmune crap going on - undifferentiated collagen vascular, which means I have signs, symptoms, labs of quite a few AI diseases, don't fall into any particular category. I have seronegative RA according to my doc, but those seronegative things can be a little iffy. I don't have diagnosed CFS. I've always struggled with moderately severe fatigue issues, but I know that CFS is a whole 'nother ball game.

    It's great to hear that Stanford is studying T3 for fibro! T3 helped me a great deal before I got on LDN, but THAT was even more of a hot potato w/my doc! I still take a little T3, much less than before LDN.

    I'm no expert in pharmaceutical compounding, however the LDN is pretty straight forward.
    Finely crush one 50 mg. naltrexone tab. Add to 50 ml of pure, room temp water. Shake well, and shake each time before dispensing. Dosing is 1 ml LDN liquid = 1 mg LDN (more or less!). So since I now take 4.0 mg/day, I measure out 4.0 mls.

    Professionally compounded pharmaceutical products will give much more accurate doses than home compounding will. But it's worked out OK for me anyway. A friend of mine who's a scientist says, well, the human body in normal circumstances makes somewhat differing amts of endorphin everyday anyway, shouldn't be a problem.

    Finding measuring equipment was the hardest part for me. Recent studies have shown that LDN in pure water is stable for at least 30 days, even w/out refrigeration. Some experts say it's stable for 60 days, but I haven't seen a study on that.

    I hope you find something to help your FM & CFS.
    [This Message was Edited on 09/14/2009]
  12. jasminetee

    jasminetee Member

    Thank you very much SnooZ for explaining how to compound LDN. I really appreciate it.

    You have great writing skills. Just had to tell you that. :)


    [This Message was Edited on 09/14/2009]