Just started LDN

[GrammaLinda]

RE: LDN it appears the threads are several years old.
After 20 some years I have finally found a Neuro who has other CFS patients. He has Rx LDN and says it has helped many. Not sure how it helps them - I have had new and worse complaints of full-body pain I recently reported to him. At the same time asking about LDN which I recently viewed on the Phoenix Rising site. I have also recently been having inflammation with fever, especially in the evenings. I now have a fever blister as a result of this fever which interfered with sleep - and I really need my sleep. It seems like every day is different. However, I have missed every family holiday function since Thanksgiving. Preferring to be home alone and in complete control.
I took my first dose, prepped by a compounding pharmacy, at 4 p.m. today. After thirty minutes I have a sudden severe headache and some chest discomfort, which has been typical of my CFS journey. This is reminding me of nitro glycerine I have taken in the past.

Have any of you tried LDN?
What were your experiences?
I will try to post updates on this treatment

 

[Creekside]

I had neuropathic pain. It was mainly (perceptually) focused in my front thigh muscles, but when my ME was particularly bad, it would be full-body. The perceived thigh aches certainly made it hard to enjoy going for a walk. I tried LDN, and the next morning I went for a hike, to where I'd given up a previous day, and realized that my legs weren't aching any more. I hiked up a steep hill, and still felt fine. I continued for another couple of km's for the pure joy of not hurting, before heading back (worried about overdoing it). Great stuff. It worked reliably for me. After experimenting further, I found I needed 2.25 mg of LDN sublingually. 2.0 mg didn't work. More didn't work better. Taken sublingually required ~30% less than if swallowed. Also, the pain blocking lasted ~36 hrs, so I took it alternating mornings and evenings. I prefer minimizing drugs that I take. After a year or so of taking LDN, the neuropathic aches stopped, so I didn't take LDN anymore.

I did try acupuncture once: needles stuck somewhere in my foot and lower leg. That blocked the neuropathic aches very well too. LDN was cheaper and more convenient for me, so I didn't continue with acupuncture.

 

[GrammaLinda]

Thank you for the post. So happy you found relief and I will pass on the neuropathy info.
After 3 doses I have been pain free. A pain spanning my lower back from one side if the pelvis to the other.. i had for over 3 yrs that worsened with standing; present every morning with brief relief during the day until I had to stand. Then shoulder pain during the night and developing into full body. It is amazing to be pain free. LDN is a miracle for pain. But pain was secondary to the fatigue and PEM so I am anxious for relief from that and the ever present dizziness.

 

[GrammaLinda]

Re: acupuncture. I tried it once. Administered by a doctor from China. His charts were in Asian script. His practice was several hours drive. He also Rx an herbal tea. Herbs kept in small drawers in a large wooden cabinet. I did also have treatments by a local chiropractor with some acupuncture training. During fourth session he damaged a nerve in my left shoulder so I stopped. I had no benefit from any sessions or the vile tea

 

[jaminhealth]

I gave LDN a 6 month chance and had ONE good day, the first day I took it and never got past the .5 mg dose. Plus too much constipation as I think back. The reason I stayed with it so long is due to the prodding of the LDN group members, they kept pushing me on and kept telling me to take MORE, but the constipation was terrible thinking back now. That was over 10 yrs ago.

One thing that is constant in my life is Grape Seed Extract and I'm close to 25 yrs of taking it. Do research, it addresses so much of our overall health...and neuropathy too.

I've been working with supplements going on 30 yrs and I'm 81 and in good health except hip replacement mess and advancing OA. I was trying to make the LDN work to avoid a hip job..it didn't work and the hip job left me with Many Complications. I want nothing to do with knives and drugs if I can help things.

 

[Not dead yet!]

Two things have helped me with neuropathic pain, my Celiac diagnosis stopped a ton of the pain, and the realization that the old wives tale is true, spinach can cause joint pain. It's almost impossible to avoid spinach is you buy those prewashed salad mixes. I now buy special large leaves like collards or Swiss chard. Acupuncture also has been of no help to me. One person hurt my ears, everyone else I tried didn't help but also didn't hurt me. The tea seems to help me though, especially Rehmannia. I wish I could just get the tea and not have to guess at the ingredients. That's the only one I've definitely identified.

I haven't tried LDN, but I've discussed it a few times with a doctor. I think I could try it if I just asked for it, because we've talked it over already. I just don't want to add to my med load.

 

[GrammaLinda]

I gave LDN a 6 month chance and had ONE good day, the first day I took it and never got past the .5 mg dose. Plus too much constipation as I think back. The reason I stayed with it so long is due to the prodding of the LDN group members, they kept pushing me on and kept telling me to take MORE, but the constipation was terrible thinking back now. That was over 10 yrs ago.

One thing that is constant in my life is Grape Seed Extract and I'm close to 25 yrs of taking it. Do research, it addresses so much of our overall health...and neuropathy too.

I've been working with supplements going on 30 yrs and I'm 81 and in good health except hip replacement mess and advancing OA. I was trying to make the LDN work to avoid a hip job..it didn't work and the hip job left me with Many Complications. I want nothing to do with knives and drugs if I can help things.
[/"jaminhealth, post: 36123, member: 5410"]QUOTE]

Glad you are doing well. I do not have neuropathy. I have ME/CFS. I am receiving replies from neuropathy patients. Which is fine as my bro-in-law is diabetic and suffers from neuropathy. I will pass on info. He has gone KETO and is doing well with it.
PS - I research daily and have been using and experimenting with supplements for over 50 years. Remember Adele Davis? I had and used her books. A certain healthy shake that used cardamon for flavor saved my family from a particularly nasty flu that everyone else had one year.

Thanks for the reply but I am going to aim for ME victims.

 

[jaminhealth]

Good luck on the ME victims aim, and I'm sure everyone "victim" is different. I have a good friend who trys and works with EVERYTHING well not everything but lots. I've told her about HGH homeopathic gel which is doing wonders for 1000's and I'd love for an ME person to go that route and see what the outcome could be if reversing is accomplished. Or reduced for a lot of improvement. I'll have to ask my daughter to do some checking about any ME people using the HGH homeopathic gel.

 

[GrammaLinda]

So I gave LDN a fair chance. No change. But I find warmer weather helps the pain, or at least has a correlation. Cold and damp seems to worsen pain, fatigue, everything. Even though pain isn't as bad as it has been, I still have fatigue, muscle weakness, and vertigo. The warmth of the sun is very healing. My doc monitors my D3. Most docs say everyone living in the Pac NW should be taking it. And we are putting in a hot tub - YAY!