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!
3 likes, 39 replies
kate07022 Nancy_K_B
Posted
I noticed this was written 7 months ago. I have Lichen Sclerosus and was wondering if yours is still gone with the LDN? I am trying LDN but haven't seen an improvement yet.
beverly52803 kate07022
Posted
kate, curious how were you able to get it? What country are you in?
Nancy_K_B kate07022
Posted
HI there Kate! Ah.. well I took forever to really get going on doing the LDN regularly; but finally did a month or so ago.
I have also read in the meantime that it takes about 6 months to see major improvements, so we really have to just trust in it and make it part of our total regimen. I DO feel better - ! as long as I don't overdo SUGAR! sugar sugar oh my god. where is it hidden? no no no. Guppy told us last year that once we make the lifestyle/food changes that we CAN go back to a little bit of sugar pleasure... but NOT 3 days in a row - haha oh my, is she ever right.
From what I can tell - we will never be rid of LS...but it will be abated as long as we respect the autoimmune requirements - i.e. I don't plan to give up my extensive supplement routine ever.. and wish I had known how important it all was 30 years ago. ahem (speaking to my dear daughter is she were to be on this site grin ).
So don't give up Kate! cheers,
kate07022 beverly52803
Posted
I am in Oklahoma ,USA. ..My doctor wrote a prescription for LDN
kate07022 Nancy_K_B
Posted
Nancy,
I have been on 4.5mg over a year now....but sometimes am inconsistent. My doctor upped the dose to 6mg but I haven't tried that yet. I think if I believed it was going to "fix" my LS I would be more consistent . This past week spurred me on to be more consistent as I developed Oral Lichens Planus in addition to my LS. I am 62....and have had this probably as far back as I can remember but was not diagnosed until I was in my 40's. My daughter was diagnosed 7 years ago.....she is now 26.
beverly52803 kate07022
Posted
Had you asked for it or did your doc suggest it? Do you have a severe case of LS? Have you been taking it very long...any side effects? One wouldn't think of OK as cutting edge, but my gyn here on the east coast was very surprised when I brought it up as she said she only knew of it being used for drug addiction.
kate07022 beverly52803
Posted
I did research on it and asked my doctor (he is a functional medicine doctor) about it. He said it was worth trying. He knew about it helping immune problems. I have a very severe case of LS and am terrified of using steroids for any length of time. The only side effect I have had is when first starting very vivid dreams...nightmare type and if I go off it and start up again after a length of time the vivid dreams return. But that went away and I have heard that is common. I am using 4.5 mg but he raised it to 6mg which I haven't tried yet. I have been taking it for about a year but to be honest it has been inconsistent and recently stopped taking it and now I have Oral Lichens Planus in addition to LS so.....I am going back on it and going to try to be consistent and will probably do the higher dose. The LS did seem better while on it but then I didn't know if it was coincidental or not because it has come and gone on its own before. My daughter who is 26 has it but not as bad and hers comes and goes as well. I am 62 and have probably had this since I was a kid. My daughter is not doing LDN she is waiting to see if it really helps me first. I have noticed when I consume a lot of sugar (I am mostly off sugar) it flares up. We have celiac disease as well and a milk protein allergy and have been off gluten and dairy since 2002. All that to say I am trying it again....some have read some have had success so I am all in trying it again,