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New Study: Low-Dose Naltrexone

Life science research should be transparent.

This is exciting news. CureTogether is partnering with Transparency Life Sciences to run a trial on Low-Dose Naltrexone (LDN). Read the letter below for details.

“Dear CureTogether and LDN community members,
If you use or prescribe Low-Dose Naltrexone, we would like to invite you to share your experience and be part of a new kind of participatory research. LDN is currently used “off-label” by thousands of patients worldwide who are inconvenienced and frustrated by the lack of regulatory and marketing authorization of this medication. A start-up drug development company, Transparency Life Sciences (TLS), is interested in performing open clinical trials on LDN for several conditions, if we get enough interest from patients, health care providers, and funders.
Your voice is important in making this happen, so that LDN can be properly studied. As a first step we suggest you visit CureTogether, a consumer driven Health 2.0 company that brings patients with hundreds of conditions together in overlapping data communities, to share and learn from each other privately. We invite you to anonymously answer a few questions about your symptoms and treatments on CureTogether’s LDN condition pages. This contribution to the community will allow TLS to assess the potential interest in LDN clinical studies, and decide which condition to study first.

If we have enough initial interest, we will reach out to the CureTogether and LDN communities again to design and participate in these open source clinical studies that will be based on outcomes that are meaningful to you, not just ones that are essential for regulatory approvals.

Thank you for being a part of changing how research is done, and helping research go forward on LDN.
Best regards,
Tomasz Sablinski, Founder of Transparency Life Sciences
Daniel Reda, Co-Founder of CureTogether”
Be part of this research by participating in one of the condition surveys listed at our LDN condition pages. Thank you!

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21 Responses to “New Study: Low-Dose Naltrexone”

  1. Hi, I have been using LDN for almost 6 months now, I have Rhumatoid Arthritis and Fibromyalgia which was diagnosed 3 years ago. 3 months ago I stopped using heaving drugs for this condition and my Doctor agreed that I am in remission, but he said he did not know if I would have been in remission anyway due to the drugs I had been taking or if it may be LDN. Hears hoping its LDN!

    Kind regards, Carole

  2. Marlene Lindstrom Says:

    I have been taking LDN for approximately one and a half years. I have Parkinson’s Disease. In the time that I have been taking LDN I have observed the following improvements in my health that can only be attributed to LDN:
    1) Lower doses of my PD medication Carbidopa/Levadopa – I am almost completely symptom free, except for right foot tremors on occassion and a crackly voice on occasion – I take only 1/2 tab of 25/100 per day along with Azilect 1 mg. as my only PD medications. My neurologist is surprised at the low doses of PD meds I am taking and is the one who is prescribing the LDN for me after quite a battle with her about my taking it. I started with 3mg and after a year have upped it to 4.5 mg. I have not noticed any difference with the higher dose. My Neurologist refills my prescriptions whenever needed.
    2) Have had chronic herpes outbreak on my back and lower buttock area for about 20 years. I was constantly taking Lysine or Acyclivor to control it. After starting on LDN it has gone away completely with only one recurrance when I was off LDN for 4 days the outbreak immediately came back. As soon as I took my first dose of LDN – 3mg at that time – it started healing the first day and has not come back since.
    3) Urinary incontinence, due to Parkinson’s Disease (bladder spasms) was a very big issue and embarassing issue for me – I went through several of the largest urinary pads a day and rarely could ever make it to the bathroom in time. When I had to go it was instantaneous and I experienced many accidents if I was not close to a toilet. I still have some incontinence, but I can now hold it when I need to and I wear a pad all day just in case, however my bladder control is about 90% improved.
    3) Toenail fungus in large toes is almost completely cleared up after one and a half years of treatment.
    4) Hereditary gum disease issue is about 90 % better than it was prior to taking LDN. My bleeding gums when brushing and flossing are almost nil. I used to have my teeth cleaned and my gums scaled every three months. I did not go to the dentist for over a year and my gums were in the best condition than I can ever remember them being. The dentist was surprised at the good health of my gums and I attributed it to LDN only.

  3. I have been on LDN for10 months. Went straight to 4.5 mgs. I have Psoriatic arthritis. My skin lesions cleared after only a couple months.
    also noticed a marked difference in my sleep quality, I now sleep very sound and dream more than I used to. My nails have improved greatly as well. I still have multiple joint synovitis. I am hopeful now. I take 5 mg of prednisone in am and minocycline 200 mg daily. that is all. My gums as well have improved as I did have a black area around several teeth from an old injury, tooth replacement. For me, LDN has not been a magic bullet, but it certainly has helped clear some longstanding problems with minimal risks. LDN should be available over the counter in my opinion. I drove over 100 miles to find a doctor to prescribe it.

  4. Superb idea, I’m really glad to see it! However:

    I just visited the “condition page” for LDN at CureTogether, but I realized that, in this context, it’s not appropriate to create a “condition page” for LDN. A “treatment page” should be created for LDN, and then it can be linked to “condition pages” for conditions treated by LDN — including MS, cancer, HIV, etc.

    Hopefully this can be done. If I can do it myself, I will…

  5. I just tried to add LDN to the Treatments section of the Condition page for Chronic Fatigue Syndrome. At the bottom of the list of treatments is the statement: “Want to add a treatment? Sign in first.” But I was already signed in. This is a bug, I think. If this is fixed, anyone could add LDN as a treatment for any condition.

  6. My husband Paul began treatment for MS almost 6 years ago. His symptoms went away with the exception of a little numbness and tingling in his palms, and he has not progressed in his disease in all of this time. He is surfing, working out, has no more depression, no bladder frequency, no balance issues, and no more fatigue. This drug has been a wonder drug for him. About 2.5 years ago I started taking it as well, and my 25+ year problem with extreem itching and deep flaking on the back of my head went away (after 3 months of starting it). We both take 4.5 mg at night. Thanks

  7. Donna Applebaum Says:

    I have been taking LDN 3 mg for RRMS since April of this year. I also take Copaxone. I have noticed a marked decrease in episodes of muscle spasms, heat sensitivity, and numbness and tingling. When symptoms have occurred, they have been of both shorter duration and less intense.

  8. I have taken LDN since June of 2006 for RRMS. I have had NO new symptoms or (MS)attacks and no side effects with LDN. I have had symptom improvements in vision, fatigue, strength and function.

    For the previously seven years, I had taken Avonex. On Avonex, I continued to have new symptoms, attacks, worsening fatigue and miserable side effects.

  9. I started LDN one month ago at just 1.5 mg. Suffering from fibromyalgia and chronic fatigue 7 years), frozen shoulder, depression, anxiety, and all the rest – pretty much homebound, not able to do anyting around house or out! Day one on it – depression was gone. Day 26 up to now Day 35 – I’m better and better. Brain fog 90% gone, energy levels way up, pain down so much that frozen shoulder that needed surgery is getting better on its own, sleep greatly improved. Amazing!

    And I am now looking at a possibly thyroid disease – which I believe I’ve had all along that caused everything and all the doctors just looked at blood tests and said was not there. LDN is amazing. The medical community needs to rethink how to diagnose thyroid conditions. I believe LDN works for fibro and CFDS because it treats autoimmune illness and thyroid disease is autoimmune.

  10. J’ai une SEP depuis janvier 2009 , ai été sous copaxone avec des poussées tous les 6 mois . Ai arrêté en février 2010 et depuis les poussées se succèdent . Le neurologue veut me passer sous tysabri , ce que je refuse . Ayant découvert LDN grâce à une amie, j’ai déb
    uté le traitement . Deux jours après le premier cachet à 1.5 mg, j’ai eu du mieux question équilibre pendant la nuit et au matin, ce mieux avait disparu . J’ai donc tout repris à la base en espérant trouver le bon dosage . Je ne suis vraiment pas bien et fonde beaucoup d’espoir sur le LDN

  11. I am using LDN in a country where its is also not available commercaily in last 3 mouths. There are improvements in my illness.

    it is cousting me 3 dolar / 2.2 euro per pill unfortunetly
    hope it ll be commercailly available drug soon

  12. A 70 yr old female, I’ve been on 4.5mg LDN for MS for 2 1/2 yrs. Dx’d in 2005 (some symptoms for years) I began Copaxone, however my condition worsened with frequent falls, urinary incontinence, extreme fatigue, severe short term memory loss, irritable bowel syn, optic neuritis, tremors, ‘foggy brain’, etc, etc, etc. Hopelessness and resignation became the norm (I had put myself on the DNR list). I had to give up my home and my pet. Within the week of initial LDN dose the fog lifted and all symptoms began to improve while some eventually disappeared. I’m off the DNR list (!) and while I now live in an assisted living facility I actively take part in life. I give all the credit to LDN, which I researched on the internet and took the info to my neurologist, who worked with me and in his words, has become ‘quite impressed’.

  13. Larry Gettner Says:

    I have been taking LDN for only two months for lung cancer. I have a small tumor and the cancer is also in the glands around my lungs (stage 4). Chemo was too harsh and actually ended up putting me in the hospital. I am also taking cantron/protocel. I am lucky my oncologist is working with me on this. I will know more next month when I go for more scans. I do feel much better.

  14. I have been taking LDN for almost 2 years. I was very ill with crohns disease, had fevers, fainting, bleeding from the bowel, and very thin, vomiting unable to have any sort of life. Today thanks to LDN I have regained my health. I take 4.5mg once at night, but found it very difficult to find a doctor who would give me a prescription. So many people are suffering who need not be.

  15. I have been taking this awesome LDN for only a month. It was a gift to me, for me to just try it out. I think it’s working for me. Now, what I’d like to know is how I can actually get it? What is the regular process?

  16. i have not been diagnosed yet but will have a pet scan for a 1.4 lung tumor. my doctor told me today that he is sure it is cancer.after i cancelled my biopsy and opted for a pet scan first i said do u think it is cancer and he said it absolutly was..but we need a biopsy to find out what kind…i read on many web sites that pet scan can stage it and see if it spread…he is already planning on removing my left and right lower lobe and mid right lobe…i am so scared and happened to run accross your sight ..can u give me details on how to bet LDN…if i do have cancer i would like to try it…thanks virginia mann

  17. I began taking LDN a few weeks ago for chronic lyme disease. I am also taking a variety of herbal antimicrobials and supplements to support my immune system. Within a week of beginning therapy (which for me needed to start at the low dose of .5mg and I am working my way up to 1.5mg) I was shocked to find that the chronic back pain I have suffered with from two spinal disc herniations was gone. Totally, completely gone. I am sleeping better than I have slept in years, and even though it has only been a few weeks I feel at least five years younger than I did when starting. For me LDN has been an unexpected miracle drug. I also suffer from Hashimoto’s thyroiditis and Raynaud’s phenomenon… am interested to see what will happen with these conditions after taking LDN for a while. Having experienced such dramatic improvement, my only worry now is that the government will begin to regulate off-label prescription of drugs so that my doctor won’t be able to keep prescribing it for me long-term. It would be a tragedy for physicians not to be allowed to utilize their professional expertise to prescribe for their patients as they see fit.

  18. I am a 53 year old male, cross -addicted polly drug abuser since I was 16. Two severe bouts of depression, the first responding well to 1 1/2 years of SSRI treatment that was 100 % successful. The last 4 years of chronic depression, severe anxiety with suicidal tendencies that has not responded to any medications and or combinations of same. Osteoarthritis pain has increased in pain that has forced an increase in Avinvsa from 60 mg /day to 90 mg /day that miraculously made all depression , anxiety, suicidcal thoughts go away in two days. My tolerance has proven it will never go away and right now I find the Medical and Psycological arms of the industry totally ignorant to the idea that a natural endorphin shortage could be the basis of Depression, etc, etc. Is there an interested party out there that I could work with to heal myself and help those thousands out there that are suffering because of ignorance? Bradford Scales

  19. Melvyn Fischel Says:

    With my continuing flare up of Crohn’s Disease I would very much like to participate in any clinical study in the Los Angeles area of the drug low dose naltrexone.

  20. Susan Chisholm Says:

    I have been on LDN 3 mgs for over a year. Taking for possible Sjogren’s syndrome. I had very dry eyes, nose and mouth. Was aching all over, tingling, and many other miserable symptoms. Went to many physicians who offered no help. Finally came across LDN and was able to find a physician out of state who prescribed the LDN for me. I am so thankful. Today, I feel like I have my life back. Although I still have dryness, it is tolerable. This is a medication that the entire world should know about…it works! It is cheap and has no real side effects at such a low dose.

  21. Patricia Lindsey Says:

    I have RA, Hashimoto’s, a post-TBI autoimmune CNS inflammatory condition, and possible Sjogren’s. I have experienced 5 different biologic agents for RA, and have been on daily prednisone for 23 years, in addition to gold, 18 years on methotrexate, and a series of other pharmaceutical agents. The next treatment on offer has frightening side effects, and the most recent one gave me renal failure (from which I’ve fortunately recovered).
    I would dearly love to try LDN (and participate in a study that might help other people like me obtain access), but without the research-based evidence have been unable to get a doctor to prescribe it.
    What action need I take to be considered for inclusion?

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