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Low dose naltrexone or LDN

Discussion in 'Your Living Room' started by Vicki, Jan 18, 2016.

  1. Vicki

    Vicki Guest

    I don't know anything about this, but found some people talking about Low dose naltrexone on a facebook group pertaining to food allergies. There are studies about low dose naltrexone on pubmed in relation to crohns, MS, fibromyalgia but not Meniere's. But the articles I have read said it works on any disease with an autoimmune component and Meniere's Disease is listed on articles about Low dose naltrexone.
    Just thought I would pass this info along.

    http://suzycohen.com/articles/the-medicine-your-doctor-never-told-you-about-but-should-have/

    Low dose naltrexone or LDN is the prescription medication that every doctor has heard of, but never prescribes. Regular naltrexone (not low dose) is used for heroin addicts, alcoholics and opiate withdrawal. I think that’s why doctors don’t really think about it, it’s for people with drug addiction. That said, the low dose version of the same drug has undeniable applications for autoimmune conditions, chronic infections and pain syndromes. Consider it an affordable adjunct especially because Remicade, Imuran, prednisone and other immune drugs come with hefty side effects and outrageous price tags.

    LDN has two functions in your body:

    1) It helps you tolerate your self.
    2) Reduces inflammation in your nervous system.

    Let’s start with number 1, tolerating yourself. Even if you can’t tolerate your annoying brother, you still need to tolerate yourself! I’m being facetious, but seriously, you must have the ability to tolerate your self, otherwise your immune cells attack your self. We call that an autoimmune disorder, and it means you’ve lost self tolerance. Think of rheumatoid, Hashimoto’s, ulcerative colitis, Crohn’s, and others. When you take LDN, you better tolerate “self.” It happens because LDN turns on “T regulatory” cells and those smack down your immune system. So yeah, forget everyone else, tolerate your self first, if you want to have good health. Your T reg cells help you do that.

    T reg cells have their own job which is to make sure that inflammatory chemicals are secreted appropriately to help you when injured, and then to stop that inflammation after you’re healed. If you don’t stop production of inflammatory chemicals (termed cytokines), then your body starts attacking everything in sight, pollen, dander, mold, dust mites (then you lose self tolerance) now it’s attacking your thyroid, your joints, adrenals, heart or myelin sheath around nerve endings. Again, LDN acts like a referee and blows the whistle on this attack.

    Now, number 2 on my list is how LDN reduces inflammation in your nervous system. This is a huge advantage if you suffer with thyroid disease, depression, fibromyalgia, chronic fatigue, Lyme or neuropathic pain. Several papers written on this topic have shown that LDN blocks microglia in your central nervous system. These microglia are just immune cells in your brain and spinal cord that, when hyperactive, produce pain-causing chemicals, fatigue, unstable mood, insomnia and cognitive dysfunction. To your microglia, LDN feels like a cold compress does to a sunburn.

    If you have any of the following conditions, I urge you to ask your physician if you can try some LDN for a few months at a very low dose, and gauge response:
    •Rheumatoid arthritis
    •Crohn’s disease
    •Celiac
    •Hashimoto’s thyroiditis
    •Graves’ hyperthyroidism
    •Multiple Sclerosis
    •Lupus (SLE systemic lupus erethematosus)
    •Sjogren’s
    •asthma
    •Raynaud’s
    •Eczema
    •Vitiligo
    •Ménière’s disease
    •Parkinson’s disease.

    LDN works by blocking receptors on your cells that allow natural endorphins in. Endorphins are compounds you make when you feel good, eat chocolate, experience a runner’s high or have sex. Endorphins increase your pain threshold. You want them inside the cell. With LDN blocking the cells, they become short on endorphins and send a chemical signal to your brain to say, “Hey, crank out more endorphins because I have none!” Your body generates more endorphins in response to the perceived deficiency.

    You probably get more endorphins in that moment, than a Black Friday sale at DSW! Emerging studies regarding dosage suggest that lower is better, such as 1 to 3mg at bedtime. Side effects are minimal and may include vivid dreaming or sleep disturbance which improves if you reduce dose or take during the day. As a pharmacist, this medicine is one of my all-time favorite drugs because it has few if any serious side effects. Remember, it is a prescription so your doctor has to call it in to a compounding pharmacy, I get notes all the time from irritated people who say “My doctor called Walnuts pharmacy and they said they don’t have it” or “Have Suzy call me and explain how to get 1.5mg out of a 50mg tablet!”
    Right, lol, that would be a big mistake! I’m not recommending you ever have a conventional pharmacy attempt to make this for you out of their 50mg tablets (standard for people using it for narcotic withdrawal) or from their injectable suspensions. No, I’m referring to the type of LOW DOSE naltrexone that is mixed up at professional, inspected awesome compounding pharmacies every day!

    LDN is compounded all the time, every day at pharmacies who specialize in making teeny weeny doses of it (and those are the types of doses you want since you are a not a crack addict!)


    Of course retail pharmacies don’t have it! I said this has to be called into a compounding pharmacy, so look in your phone book (do they even print those anymore?) or Google it online. Do like I do, and ask Siri she’ll find you a compounding pharmacy. I just tried it on my iPhone and she found 3 of them near Denver and Boulder. Many compounding pharmacies can ship LDN to you home, so if there isn’t one in your city don’t give up. LDN is shipped all over the country, every day!

    LowDoseNaltrexone.org
    That’s a great site with more answers to all your questions since I can’t answer all of you personally. It’s impossible for me to teach one doctor at a time as this will eat up hours of my day, each day. Please understand I get hundreds of emails a day, into the thousands if you count all the different places people can ‘talk’ to me via social media, my newspapers, and so forth.

    The dosage starts around 1.5mg taken once at bedtime. Vivid dreams can occur as you titrate upwards to 3 or 4.5mg. While some disagree with me, I feel that taking it in the daytime is okay if you can’t tolerate it at night, like … if you get nightmares or insomnia. Then in that case I would definitely take it in the morning, and also I recommend you stay at the lower dose, like approximately 1.5 milligrams.
     
  2. Vicki

    Vicki Guest

    http://lowdosenaltrexone.org/

    Low Dose Naltrexone (LDN) may well be the most important therapeutic breakthrough in over fifty years. It provides a new, safe and inexpensive method of medical treatment by mobilizing the natural defenses of one’s own immune system.

    LDN substantially reduces health care costs and improves treatment of a wide array of diseases. Unfortunately, because naltrexone has been without patent protection for many years, no pharmaceutical company will bear the expense of the large clinical trials necessary for FDA approval of LDN’s new special uses. It is now up to public institutions to seize the opportunity that LDN offers.”

    LDN Website Contents

    > On this page you can find answers to these questions:
    •What is low-dose naltrexone and why is it important?
    •How does LDN work?
    •What diseases has it been useful for and how effective is it?
    •How can I find a reliable compounding pharmacy for LDN?
    •What will it cost?
    •What dosage and frequency should my physician prescribe?
    •Are there any side effects or cautionary warnings?
    •When will the low-dose use of naltrexone become FDA approved?
    •What can I do to spread the word about LDN?
    •Who sponsored this website?

    > You can go to more detailed information on these linked pages:
    •The Latest News Concerning LDN
    •Clinical Trials for LDN
    •Community-Driven Research for LDN
    •LDN Editor’s Blog New!
    •LDN Events:
     
  3. postbag

    postbag New Member

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    Jan 14, 2016
    I have just spent the last hour reading up on LDN on the internet. It sounds extremely promising.... I hope there is some response on this subject, but there are plenty of first hand accounts elsewhere. I have several auto=immune diseases, as well as the possibly auto-immune MM and my husband has Parkinsons, all of which may be helped by LDN if all I read is true! I know none of my doctors will agree to prescribing it though! But I am perfectly willing to buy it on line (have already found a well documented source in US). It will be interesting to see what others say.
     
  4. Vicki

    Vicki Guest

    Thanks for your input postbag, yes I am interested as well to hear if anyone knows anyone taking this. I too have read positive accounts but from people on other sites, which I am not familiar with.
     
  5. Maggie

    Maggie Guest

    Thanks for this, vicki. Lots of promise here. Can't go wrong with lots of endorphins.

    Btw, vicki, do you ever sleep? You provide so much valuable information. Thanks for all you do.
     
  6. Vicki

    Vicki Guest

    LOL Maggie and you are welcome
    yes I sleep a lot at least 8 hrs a night and very well. My husband said if a bomb went off I wouldn't hear it.

    I did find this which has a lot of good info on LDN

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
    its too long to paste so I will just paste the conclusion, but worth reading, it seems to be an accurate assessment of LDN
    Clin Rheumatol. 2014; 33(4): 451–459.

    Published online 2014 Feb 15. doi: 10.1007/s10067-014-2517-2
    PMCID: PMC3962576

    The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain


    Jarred Younger,corresponding author Luke Parkitny, and David McLain


    Author information ► Article notes ► Copyright and License information ►



    This article has been cited by other articles in PMC.



    Go to:

    Abstract
    Conclusions

    The totality of the basic and clinical research to date suggests that LDN is a promising treatment approach for chronic pain conditions thought to involve inflammatory processes. The clinical data supporting its use are very preliminary, and more research is needed before the treatment approach can be widely recommended. Critical parameters such as dosing still need to be refined. LDN may emerge as the first of many glial cell modulators that could be used to treat chronic conditions, with more specifically targeted medications developed in the future. As conventional anti-inflammatories have poor blood brain-barrier permeability, we expect centrally active immune modulators to be an area of interest in the future.
     
  7. nicmger

    nicmger Member

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    I have done a lot of reading about LDN. I think the big "challenge" is that there is no big incentive for full clinical trials of this on Meniere's or any auto-immune disease as this is a very low cost drug.

    It is my understanding that when prescribed as per the normal usage (after drug addiction - 50 mg+ day) there are some health issues that make this a short term only drug. BUT for Meniere's it is more like 1-5mg only so the health risks are very low.

    I have found online posts about being able to take the standard 50mg tablet - it is dissolved in distilled water and refrigerated. Then you are able to use the low dose without paying for the extra cost for compounding.

    I absolutely believe that this could be helpful for many. All of the theories about Meniere's (inflammation, etc) are addressed with this protocol.

    Just like with anti-virals though, I believe that it will certainly require an open-minded doctor to give it a try.

    And can't stress enough that with a cheap drug, it is going to be very unlikely that we will ever see big clinical trials on this so it will be more of a doctor and patient giving it a try.

    Great info Vicki!!!
     
  8. Vicki

    Vicki Guest

    I joined a FB research group for LDN just to learn more and they have info packets to show doctors, list of Drs that prescribe LDN, and many more pdf files. If anyone interested in getting more info on this drug this is the FB group I joined

    https://www.facebook.com/groups/LDNRT/?ref=br_rs
     
  9. Sharon406

    Sharon406 Member

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    Any word from JOH on this?

    Also wondering if Dr Gacek might have an opinion. He seems to be more open to new ideas.
     
  10. John of Ohio

    John of Ohio Active Member

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    I am somewhat familiar with LDN therapy. I even tried it for a non-Meniere's condition I have --- for which there was only a small chance that it would be helpful. And, it was not.

    As always, I encourage adventurous types to try new things. But, personally, I doubt that it will have much efficacy against most Meniere's cases. LDN therapy turns down autoimmune mechanisms, and because immunity-induced inflammation may play a certain role in Meniere's, LDN might, at the start, appear promising.

    But there is no evidence, or physiological reason low dose naltrexone can stop herpes viral activity. LDN might, for a time, reduce overt Meniere's symptoms; but the underlying root cause of those symptoms, an active, embedded herpes virus, will remain, continuing to cause damage to inner ear tissues and nerves. LDN therapy is not antiherpetic. In the vast majority of Meniere's cases, unless the underlying, rood-cause herpes virus infection is thoroughly suppress, the disease will persist.

    --John of Ohio
     
  11. Vicki

    Vicki Guest

    for those whose MM is not connected to an HSV it may be something to look into.. Not every person with MM has an HSV causing their symptoms.

    Thanks for your input JOH, as always enlightening.
     
  12. nicmger

    nicmger Member

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    I agree. There does not seem to be one treatment that works for everyone so any option of another treatment should be embraced. We never know what will work for each person.
     
  13. Vicki

    Vicki Guest

    very true nicmger
     
  14. EkkoMusic

    EkkoMusic Member

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    Checking in on this six years later — any new findings on LDN for Meniere's Disease?

    (This 2020 story from TinnitusTalk inspires me to ask).
     
  15. meemil

    meemil New Member

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    Chiming in as well, discussed about this with Ekko earlier. Very interested to hear if anyone here has tried it out and especially so, if you have a bilateral case of Meniere's.
     
  16. Technophile

    Technophile New Member

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    FWIW, when I was first diagnosed with Hashimoto's in 2018 (and had Meneiere's but was not diagnosed yet), I tried LDN for about a year. It seemed amazingly promising from everything I read, but for me it had no noticeable effect on either Hashimoto's or my tinnitus, vertigo and hearing loss episodes (diagnosed as Meneiere's in early 2021).

    Later, with genetic analysis and determining (D to PTH ratio), I confirmed vitamin D resistance. So, while my D levels were in the upper third of normal, my ParaThyroid Hormone level was also in the upper third, though when D is higher, PTH should be lower if the D is bioeffective.

    When I started self-treating, with monitoring from my endocrinologist, using the Coimbra protocol 8/2021 (which I had to reverse-engineer somewhat from a lot of Internet research), I started seeing significant test improvement within four months. I had started on auro betahistine in early 2021, and that seemed to have stopped the tinnitus, hearing loss, and vertigo attacks, though the hearing loss is permanent.

    Use of the Coimbra protocol is an attempt to stop the autoimmune response causing my body to attack my thyroid and inner ear. (I guess there is some controversy as to whether Meneiere's is always, sometimes, or never an autoimmune disease.)

    My hope is that continued monitoring and adjustment of the Coimbra protocol for the next year or so will allow me to stop the auro betahistine and simply reach a maintenance level of D supplementation (I'm guessing about 15K IU / day) to suppress the autoimmune response. While beta aurohistine is not terribly expensive, it isn't cheap either, especially when compared to D.

    Hope this helps someone looking for options.
     
  17. Megan Henry

    Megan Henry Member

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    I take LDN! It helps SO much!
     
  18. Fireblade

    Fireblade New Member

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    how can you get LDN? :)
     
  19. Megan Henry

    Megan Henry Member

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    Ldndirect.com
     
  20. EkkoMusic

    EkkoMusic Member

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    Whoa. I'll have to look into this!

    If others are trying this, PLEASE report back with updates on if it works or not. It's the only way we can steer towards even better treatment.

    I second JOH's thoughts regarding needing to focus on anti-herpetic treatments, but maybe we can distill this down to understanding why this helps some patients, and not others.
     
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