LDN for Lichen sclerosus experience

Posted , 13 users are following.

HI All, it's been ages I know. I've been meaning to share with you all a potential healing modality that a friend told me about several months ago. I got my integrative cardiologist to prescribe it for me - he said he has lots of patients who swear by Low Dose Naltrexone. I've found online that the off-label use has over 20 years of small but serious medical studies that confirm it's helpfulness.

I'm copying one testimonial here . It's only an example; if interested you'll have to investigate further and read up. I've finally started it and already recognize that it raises my mood and energy (smiles).

from a woman named Ruth Eisenberg who says: I'm a 60 year old woman and a registered nurse on early retirement. I live with my husband and the youngest 4 children of eight in Copenhagen, Denmark, surrounded by our 8 grandchildren and a host of precious friends. I’m thankful for my life!

"My husband and children were all injured in various degrees, and our five month old baby daughter had been killed instantly during the accident.

Fourteen months later, I developed fibromyalgia. Six years passed and four more girls arrived, before I was diagnosed. I suffered widespread pain and no analgesic gave me relief. I was often in a poor condition, though I somehow managed to care for my home and my eight children, who have enriched my life greatly.

I also developed Lichen Sclerosus (LS), a skin condition that developed above my breasts and in my genital area, about six years ago. The skin itched intensely. Then, sexual relations also became painful due to cracked skin, and bowel movements became excruciating (the pain of going to the bathroom had a strong association with giving birth). These symptoms were a daily annoyance. I started to fear having sex and had to use laxatives to try to make it tolerable to go to the bathroom.

For the fibromyalgia, I tried all the conventional drugs prescribed for the disorder, including antidepressants. Even if a drug did give some relief, the side effects were intolerable.

What treatments/approaches did you try first and how did they work for you?

For the LS skin condition, I was prescribed strong steroid cream, but I didn't want to continue using it, since I was familiar with the potential for long term side effects. Instead, I used coconut oil, which eased the symptoms to some degree, but didn’t resolve the condition. For the fibromyalgia, over time I tried all the conventional drugs prescribed for the disorder, including antidepressants. Even if a drug did give some relief, the side effects were intolerable. In the end, I gave up using all the medications and started researching healthy lifestyles, natural healing sources, etc. I've prayed a lot to be led on the right path through the jungle of information and offers of ‘miracle cures’.

I told my family doctor that I would like to try LDN.

What has been your experience discussing LDN with your healthcare providers?

I wrote to my family doctor and told him that I would like to try LDN. He answered me that it is a medication used for drug abuse. He didn't research it. I then printed out information about LDN and gave it to him (including information from a pain clinic prescribing it for fibromyalgia). He is a good family doctor, but he is not comfortable dealing with something he is not familiar with, so he preferred I consult with specialists about LDN. I found a pain clinic a 20 minute drive from me and my family doctor referred me there. The specialist there (an anesthesiologist) had already treated close to 100 patients with LDN, and I had no problem getting a prescription from him. That was in November 2015, and I still see him every few months for evaluation.

When did you start LDN and what was your experience?

I started LDN the 25th of November 2015. I felt an immediate response from day one, feeling lighter in my mood, more awake and less tired. My pain level decreased and energy level increased daily. I started to sleep better and wake up with a feeling of happy expectation for the day. (Previous to LDN, I had severe sleep disturbances for many years and never woke up feeling refreshed.)

I felt an immediate response from day one, feeling lighter in my mood, more awake and less tired. My pain level decreased and energy level increased daily.

At Christmas time that year I was able to do so much more than I've been able to for years and the feeling was wonderful.

After New Year’s, I had a setback, but I think it was because I had been overdoing things in my excitement. Additionally, in the first few months when I’d escalate the dose, I usually had a few days with a slight headache. But I'm used to migraine headaches, so this wasn't really a problem.

What are the biggest changes in your life since starting LDN?

Regarding my fibromyalgia, I can testify that LDN has given me a new life…not a life completely without pain and exhaustion, but a life where I can function and do my daily chores without feeling like I have to climb a mountain. I don't dread upcoming events; I know I can manage. I still have to be a wise steward with my resources and not overdo things, but I have hope that my condition will still improve. My condition has been bad for so many years, so I know it takes time to build up my strength again and for the body to repair (not to mention the damage over the years that conventional medicine has done). I know that patience is needed, but so far I'm very happy and grateful for the changes that have already occurred.

After 11 months of LDN, my skin condition has healed 99%. To me, that is nothing short of a miracle!

In addition, after a few months of LDN, I started to notice an improvement in my Lichen Sclerosus. This was an unexpected and amazing positive side effect. Now after 11 months of LDN, it has healed 99%. To me, that is nothing short of a miracle!

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  • Posted

    This is an interesting development in our knowledge base here in the Forum. Similar to the person who's testimonial you provide I have Chronic Fatigue Syndrome, which, similar to Fibromyalgia and ME (Myalgic Encephalopathy) share a core of similar symptoms and impacts on everyday functionality. As with the Lichen Disorders, there is growing academic evidence that conditions such as ME have their etiology, or at least strong links with, as an autoimmune disease.

    As your own very detailed research has shown Nancy, there is a great deal that LS sufferers can do to lower the impact that the condition has by radically altering food intake and by taking a range of known Vitamin and Mineral Supplements. Hopefully, LDN will prove to be another useful addition in the armoury of LS sufferers as to whether to try this or not. I look forward to your more longer-term findings of how you get on with taking LDN ......

    PS: the Aloe Vera Gel (2 tablespoons) mixed with Turmeric Essential Oil (4-6 drops) continues to do my genital skin a great deal of good and I continue to require less-frequent Clobetasol as a result. I will continue with this and see how my skin shape-up myself on a more long-term basis!

    • Posted

      I"m SO glad to hear that the aloe vera gel tumeric mixture has been helpful for you too, Wee Dugie. It is definitely my go-to ointment these last few months as well. I've given up all others except for coconut oil. about the LDN I think I also saw an article that mentioned that it helps reduce our c-reactive protein levels if needed... I had never heard of c-rp before someone on here mentioned it a few months ago. wow. so this should be a good test....

  • Posted

    Is anyone else having problems trying to get to this discussion when you are notified that there is a new comment? This is a new experience for me. When I click on the message I am taken to a page that says "The page you requested does not exist" with a box stating "Contents Notification Redirect 6661742647". That takes me nowhere. Anyone know what is going on?

    • Posted

      I think the site is having a bit of a 'wobbly moment' - too much Christmas pud perhaps?!

      What you should be able to do is if you can navigate to the intended discussion forum via another link (not always easy I know!) then click on one of the "Report" Flags in the bottom left hand corner and use the "Other" option and briefly describe the technical issue you are having so that the Web Site Administrators can raise the problem with the Technical Support Team.

      As it happens, I have just tried to click on your "Report" Flag and it does not work (it takes me to the top of the page to Nancy's original post instead ...... !!!!)

      Isn't technology wonderful ..... !!!!!!

    • Posted

      I have now just clicked on your email alert for this discussion in my email Inbox and I get the following:

      " The page you requested does not exist " and the Box states " Contents Notification Redirect 2689999214 " - certainly something technical gone awry ......

    • Posted

      Wee, I have been away for a few days and have messages from the forum that I cannot open. Just tried to open one from che05779 that took me to that "not existing" message.

      I just clicked on my message above to try "reporting", but isn't that about people making inappropriate comments or ads?

      If there is a discussion or question somewhere from "che" where would it be?? She was asking about remission. Have you been able to access it?

    • Posted

      Hi Beverly/Wee_Dugie,

      Sorry for the late reply, I have only just been made aware of this. Can you let me know if this issue has now resolved itself or are you still getting error messages etc when clicking email links? I have tried to recreate the issue but cannot.

      If you are still having problems could you forward an example email to ps.webmaster @ patient.info (remove spaces) as the developers need the actual email to investigate properly.

      If you do forward an email reply here to let me know.

      Regards,

      Alan

    • Posted

      Alan, it just happened with a new message from Svenska. I was able to open her post yesterday, but not the most recent. I sent the address of the page saying "page does not exist Contents Notification Redirect 5784167291" to the address you provided.

    • Posted

      Hi Beverly,

      Yes got it along with several example emails from other users users so thank you for that. The problem is the link within the email has the wrong format so I have passed these on to the developers so they can investigate and fix this. I will let you know when it has been put out.

      Regards,

      Alan

    • Posted

      The Report notification (flag icon in bottom left corner with hot-link word "Report") is for any reason that we want to raise issues with the Moderators (Click Report and go to the "Other" button/circle) otherwise we have no means of contacting them to know the site is not operating as it should.

      Not sure about the specific email alert you were asking about, as I have just got to your reply message now - not even sure whether I got an email alert for your message.

      My email alerts had been working for the last 7 or 8 days until yesterday, then I got one that did not lead to the forum posting again - I have notified both the Moderator and the webmaster email address directly with the example alert that is not working for me ......

  • Posted

    Hi all,

    The problem with emails giving errors or page not found messages has now been fixed. There was a problem when the fix was put live which resulted in a few hours of notifications not being sent for which we apologise. If anyone does have this happen again or any other issues with emails/notifications then please let me know.

    Regards,

    Alan

    • Posted

      Hi Beverly,

      I haven't replied until now as we were working on this yesterday. The issue with emails giving 404 error messages has now been fixed properly. The fix will also mean any broken emails previously received will now work. I have checked this with all of the emails I received and the examples users forwarded and pasted in discussions.

      Once again sorry for the inconvenience and please confirm emails are working or let me know if there are any issues.

      Alan

    • Posted

      Thanks. I wish there was a way to notify you easily, but it is beyond my technical abilities and I'm usually on to my next email after unsuccessfully trying. I have yet to figure out a screen shot...assuming that is what is required. Copying does not work...for me anyway.

    • Posted

      Hi Beverly,

      As you have done before use the Report link on any post and use the "Other" option to type a message to contact us. Alternatively click on the envelope under my name to send me a Private Message if you can find a post from me.

      In this case screen shots would not have helped but the emails you and others forwarded did. If you have any issues and I need further info I can contact you once you report as above.

      Alan

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