LDN Community - does anyone read these posts or just put fancy videos up?

I have become a little frustrated with this community and am starting to believe it's just an advertising portal rather than a true community. Unlike the other communities I am a member of on HealthUnlocked, this one does not have any flow of comments and responses. All we seem to get is a stream of advertising videos!

Some time ago I asked if anyone knew of LDN being used for MSA (Multiple Systems Atrophy). I haven't had a single comment - surely someone has some experience- spare a few moments from making the videos and try and answer a genuine need in the community.

EXTRACT FROM MY PREVIOUS POST:

I wonder if anyone has any experience with LDN and Multiple System Atrophy (MSA). The condition has no known cause and no known cure and many of the symptoms are Parkinsonian in nature. Some of the same drugs used in Parkinson's are used to help the symptoms of MSA.

27 Replies

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  • Hi, I'm afraid I can't answer your question but wanted you to know someone is reading your post!

  • Thanks DH65 - good to know that there is at least someone out there rather than just a publicity machine on this community.

  • Ditto guys!!!. I tried a direct P.M a couple of weeks ago to ask if it would help with liver disease, cancer and autoimmune diseases after listening to a radio broadcast. No response!. Maybe someone will reply to us now, we,ll have to start counting ourselves, Yanno you,re 1, DH65 2, and I make 3. Anyone else?. x x

  • I think the thing that annoys me most is that elsewhere on HealthUnlocked communities are really places to share advice, support others and compare experiences. This LDN group just appears to be for promotion of the "specialists".

    Maybe a case of 'the emperor's got no clothes'?

  • Badger, I haven't received any PM's from this forum. I'm not a medical professional, all I can go by is our information from our supporting doctors. Cancer & autoimmune disorders are usually helped with LDN. I don't know as much about Liver Disease, so here is a link to papers, etc on the website: ldnresearchtrust.org/search...

    Michelle

  • Hi there. I am sorry I dont have any experience with LDN and MSA but I do watch the videos on LDN with great interest as my husband gets a private prescription and uses this for Crohns with great results. It is great to know what else this can help. So I for one are really happy that these videos are here to spread the word about LDN. So many people are out there suffering unneccessarily and more people need to be aware of this treatment.

  • I too appreciate all the audio reports about how LDN is helping people everywhere. I've learned so much from listening to these reports and specialists. THANK YOU so very much for posting these for those of us who take the time to listen and learn.

    Stella

    Dx PBC autoimmune disease 10/2016 started LDN 2/17.

  • Hello Ktitel

    I see that you have recently started LDN How are you finding it so far? Have you managed to build to the full strength or are you still on the path? When did you find the positive effects start to 'kick in'?

  • Hello Yanno,

    I started ldn 6 weeks ago. I started on 1.5 mg for 2 weeks, then 3 mg for 2 weeks, then finally 4.5 mg. But into the first week on the 4.5 mg, I was jittery and anxious. So I went back to 3 mg once at night. I feel pretty good. And did start to feel that way the first week on the 3 mg. I do have some sleep disturbance but I try to take a nap mid afternoon. I'm having blood work Monday so, I'll keep you posted as to how ldn is affecting my liver enzymes.

  • Hello Ktltel. I am husband and very willing full time carer for my wife Jackie. She started LDN on a much lower level than you, just 0.5, and is building at 0.5 per week. Now at 2.5ml - 4th day - with no noticeable improvement. She has had headaches each morning (she takes it at night) and some nausea which is a shame. She intends to try and continue at least for the time being.

    The very best of luck with your treatment on Monday, I hope it all goes well.

    Take care, Ian

  • Try to push through the rough spots. If she has candida, ldn will not work well. Some people take longer than others to notice differences. My nausea (which was slight) subsided, and I do have occasional dizziness. Don't take ldn with hot beverages, and do take it on an empty stomach.

  • If the nausea is continuing, you can ask the pharmacy to make the LDN in sublingual drops. They bypass the digestive system completely, patients with nausea have seen it subside with the drops.

  • Hi Yanno, I've only just seen your question. I was particularly interested because I was wondering exactly the same about LDN and MSA. I'm a carer for my friend who MSA, this rare and horrid disease. I was only recently told about LDN when I was discussing my own health. After reading about the various conditions it can help and in particular, Parkinsons disease, it got me to thinking whether there was any chance LDN could help alleviate the PD symptoms in MSA? I was going to ask the MSA nurse at the MSA Trust if she could find out. Unfortunately, I've been too ill myself this week to inquire.

  • Hello Plysgogger, Sorry to hear you are unwell and hope things improve for you.

    First and foremost, please join the community for Multiple Systems Atrophy within HealthUnlocked. We have pushed for this to be formed and it now up an running with a number of members. On that you will see my wife's, Jackie, experience with LDN - 4 weeks in.

    We spoke to the Trust and they had no knowledge of anyone trying LDN. We have also for sometime being trying to get some answers from this community but to-date have had no response other than some very genuine affirmations of the product for other conditions.

    I also have tried to contact an american professor widely quoted in the LDN literature and he hasn't given the courtesy of a response either which is all so disappointing as it has started to make me very suspicious.

    You will see elsewhere that there are many supporters of LDN it's just a shame this community has not developed like others into a medium to ask and get responses to the questions we are both asking.

    Keep an eye on the MSA community and we will update you on Jackie's progress.

    Take care, Ian

  • Thank you for the information!

  • Hi. Did anyone get a best time of day to take the ldn? I was not told. Also could you give the reasons for the particular time if you don't mind.

  • Hello Wilma; I am disappointed that no one from the LDN Research Trust hasn't quickly answered your question - they are probably busy making their next video!

    Their literature states:-

    LDN can cause sleep disturbances if taken at nighttime – this is most likely because of the

    increase in endorphin release. These disturbances can take the form of vivid dreams, or insomnia.

    (this really needs to be read in the context of the full document)

    They also say:-

    Many websites and internet resources state that LDN

    only works if taken at nighttime; however, clinical experience over the last decade clearly demonstrates that it is as effective in the morning – with far fewer side effects.

    My wife has suffered severe nausea since starting with LDN and we have moved from the morning to the night as she already takes medication to manager her 'night terrors' which are symptomatic of her condition. This has eased the nausea somewhat but it is still an issue.

    I hope this is helpful, Ian

  • Wilmahair,

    My apologies for the delay in response. Conventional thinking has been to take LDN at night, some take it right before bedtime, some take it 1-3 hours before bedtime. It's an individual decision, if your sleep patterns are disturbed, it is okay to try daytime dosing.

    Michelle

  • Thank you Ian. I never thought to ask my Dr and till i can travel the 2,000 km south again our consults are by phone. They are not claimable by Medicare so i am reluctant to make extra appointments. Where did you get this information and if at all possible could i please have a link to the information.

    Thanks. Wilma.

  • Hello Wilma. The information you want is on the LDN Research Trust web site - ldnresearchtrust.org and there are a number of factsheets on this page ldnresearchtrust.org/ldn_fa... The items I quoted from are from the UK factsheet but I see there is an international one there as well.

    I don't know how easy it is to get LDN in Australia but here in the UK we have an excellent pharmacy in Glasgow (still in the UK for now at least!). They provide the medication next day by mail but we do need a private prescription.

    Good luck Wilma, I hope things sort out for you. Ian

  • Hi Yanno, I'm a bit late in replying here but I have just found out about LDN and doing the research.. it all seems a bit too good to be true so I wondered about your post... This community doesnt seem very active like the others and I've ended up giving my details to an online group who supply the LDN after interviewing people by phone.. From the posts here the initial side effects seem quite bad and when I've checked some of the science links on the websites they do not seem to relate to the title - one took me to a study led by doctors from Benin who weren't even discussing LDN... I'm rather put off trying it...

  • Hello there, I understand your reticence and agree that this community is surprising in its lack of just that.... 'community'. I think the LDN Research Trust let themselves down badly here as when I contacted them many months ago they responded very quickly, even over a weekend I seem to recall.

    Our neurologist has heard of some excellent reports following the use of LDN whilst he has also experienced a number of people who just reported no benefit at all. I think he is unsure whether it's just a placebo effect or people who would have gone into remission anyway.

    My wife suffers from a rare neurological condition and I have received absolutely no help from any of the 'LDN professionals' in judging if it will help her or not. Like you I followed some of their research and tracked one of their quoted sources down to Georgetown University in the USA. I sent two pleading emails asking for any advice he could give and didn't even get the courtesy of a reply.

    If you track back through this post you will see that badger4218 and DH65 have had similar experiences. Is this all a case of "the emperor's got no clothes"!

    At the least the LDN professionals have shown themselves to be distinctly unconcerned about the individual experiences of people trying to judge the validity of their product.

    Now...turning to a more positive note...should you decide to take LDN the accepted place to purchase the product appears to be Dickson Chemist of Glasgow. They are just superb to deal with. The dispensing staff are friendly, knowledgeable and very efficient...a pleasure to do business with. It's just such a shame that the so called LDN professionals don't show the same level of professionalism and empathy!

    I am tempted to post a video.."Yanno - a frustrated client shares his experiences of LDN Professionals"

    Whatever you decide, good luck.

  • Boozybird,

    If you go by forums, then you would indeed think the side effects are hard to deal with. That happens to very few patients, most of the time LDN isn't the culprit, but those who are very, very sensitive to any medication will struggle. We usually advise those patients to start low and build up slowly. .5 mg daily to start, increase by .5 mg every 3-4 weeks, when you feel your body has adapted.

    Michelle

  • My apologies to all of you! I'm the admin for this page and my life exploded two months ago with obligations & issues.. I rely on this site's reminder emails and missed this and the other post a month ago.

    This was not the Trust's fault, it was mine. We are all volunteers and there are few of us to handle forums. I appreciate your understanding - all of us deal with chronic pain issues, which can impact daily life and our responsibilities.

    Michelle

  • There is no information about Multiple System Atrophy and LDN in our files, nor do we have any testimonials from patients with this issue. A quick look-up of MSA says it's a neurodegenerative disorder, not an auto-immune or inflammatory issue, so LDN would be an experiment for you and your doctor. LDN is relatively benign, so if your medical team agrees to try it, it might be a good idea.

    There's one other option. At the bottom of the Trust's homepage is a form to "Ask a Medical Professional". You could ask this question there and see if there have been any news for MSA. Here's the link: ldnresearchtrust.org/

    Michelle

  • Thank you Michelle

    I am grateful for your response and so sorry that you have some personal issues - I hope they sort out as much as they can.

    I think you have probably answered my question - that it is unlikely to help MSA. My previous frustration is with the professionals who are happy to make videos about the benefits of LDN and yet will not answer some simple questions.

    Thank you again for your response. Hopefully with you and your colleagues efforts this community will move in the direction so many others have on HealthUnlocked, to a true interactive support community for those with a common health interest.

    Take Care, Ian

  • I did ask our Radio Show interviewee (Dr. Jill Cottel) your question today. She said her patients with neurodegenerative diseases took much, much longer to see beneficial results. As long as one full year. Out of several hundred patients on LDN in her practice, she is only treating a few patients with these issues.

    It's frustrating as LDN is generic & compounded, so there's not a profit in underwriting large studies. Most of our information comes from doctors willing to try it with a group of patients. If you and your doctor decide to move forward with trying LDN, please keep me updated.

    The LDN Trust is completely volunteer managed, the founder spends most of her efforts in getting documentation done - whether that's study reports, Doctor/Pharmacist experience or patient testimonials. The Trust resides in the UK, with stringent rules for health trusts. At this time, we do not have Doctor volunteers with time to help us on a daily basis, this is why we created the "Ask" form. I will do my best to be more interactive on this site :)

    Michelle

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