RLS and LDN

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RamblinRosie
Posts: 11
Joined: Fri May 22, 2009 8:01 pm

RLS and LDN

Post by RamblinRosie »

I typed and posted a msg over an hour ago but haven't seen it appear. If this is a duplicate, pls understand why.

My neurologist just prescribed LDN for my RLS but I have to wait another 10 days before taking any, because I took Darvocet-N 100 last Thurs. I need to get it completely out of my system.

I haven’t been on this site lately because I’m spending free time researching LDN. I’ve joined the yahoo group for lowdosenaltrexone. I’ve copied below excerpts from 2 msgs from that site on RLS.

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After the first ldn pill, my restless legs completely went away. My whole body was restless when I would lay down not just my legs. I used to have to take freezing cold showers to bring my body some calm. Now I can't wait to lay down and feel at peace with myself.

Secondly, I now wake up every morning feeling positive and happy and have more energy. I tried taking anti-depressants in the past but they would bring on suicidal thoughts which I never had before. Therefore I couldn't take them. I never thought I could be happy again. I'm grateful for all the good things in my life but I have gone through too many health issues to be normal. Now, with ldn, I'm truly becoming the person I used to be. I can't believe it.

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I seem to be sleeping better than ever since I've increased my melatonin, and at the same time began LDN and increased magnesium as well. I've had RLS for years and haven't had it since I've started this new regime. I've also began a vegan/gluten free diet and I feel better than I have for years. I'm not sure what to attribute it to, but something is working.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

What is LND??

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

The only time I heard of it is when you posted about it earlier. I have no experience at all.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16204
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Ah, Rosie, I found your other post. It's in the Pharmaceutical section. I am deleting it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

RamblinRosie
Posts: 11
Joined: Fri May 22, 2009 8:01 pm

RLS and LDN

Post by RamblinRosie »

Weeks ago my aunt emailed me requesting I spend an hour looking at LDN. I googled LDN and opened www.lowdosenaltrexone.org

An opening sentence caught my attention “FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.”

The site has reports/videos from CBS and ABC News. There was a European LDN Conference April 2009 in Glasgow and there have been several in Los Angeles, the last one was this past Nov.

The yahoo group has close to 7,000 members from all over the world. (There were only 6,000 a few weeks ago.) I am amazed at all the people LDN is helping.

I am sharing this info with this group because I truly feel it’s going to help us RLS sufferers. I wrote several emails to the RLS Foundation (1 response), including several to Ask the Doctor (no response).

Ann, thanks for locating and deleting my wayward post.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

cautionary warning about LDN

Post by mackjergens »

i will post this info I found on the web site for LDN, i think it would be difficult for me to stop my meds for 2 wks, just to try this one, but that is just my opinion
__________________________________________________________
> Side effects:
LDN has virtually no side effects. Occasionally, during the first week's use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.

> Cautionary warnings:
Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication — such as Ultram (tramadol), morphine, Percocet, Duragesic patch or codeine-containing medication — should not take LDN until such medicine is completely out of one's system. Patients who have become dependant on daily use of narcotic-containing pain medication may require 10 days to 2 weeks of slowly weaning off of such drugs entirely (while first substituting full doses of non-narcotic pain medications) before being able to begin LDN safely.
Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.
Full-dose naltrexone (50mg) carries a cautionary warning against its use in those with liver disease. This warning was placed because of adverse liver effects that were found in experiments involving 300mg daily. The 50mg dose does not apparently produce impairment of liver function nor, of course, do the much smaller 3mg and 4.5mg doses.
People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications.

RamblinRosie
Posts: 11
Joined: Fri May 22, 2009 8:01 pm

RLS and LDN

Post by RamblinRosie »

Yeah, it was difficult last night not to take the Darvocet, but I want to try LDN. This may be long but I feel I should explain my reasons:

I have suffered w/severe RLS for 12+ yrs. Every 15 mos or so I need a new prescription or to increase dosage. I now take 3 mg Requip (2 in pm/1 in am). Since April, augmentation again, w/RLS 2-3 times daily. (I'm becoming a hermit.) Instead of increasing Requip again, I want to try LDN.

Thankfully, RLS drugs and a cream for Rosacea are the only prescriptions I use. I have been active and a vegan most of my adult life, organic when available. I cut out gluten for the past 18 mos (feel no different). I am into alternative medicine but eventually I had to turn to drugs for my RLS.

I have other issues, arthritis and a spinal cord injury. 4 neurosurgeons/1 neurologist say I will eventually become a quadriplegic. Slowly, I have more and more trouble walking and holding onto things.

End of January I had a lumpectomy for a malignant tumor. It was tiny but because I am HER2-NEU positive, chemo is prescribed. I refused chemo, radiation and any of the oral drugs. (I watched my mother go through chemo twice and refusing it the 3rd time. The side effects of those oral drugs are scary!)

My oncologist researched LDN and repeatedly advised me to see my neurologist. He also said if I were his friend and not his patient he would tell me to "go for it." (We could not at that time find a clinical trial in the US on LDN and HER2-NEU. Have now found one but I don’t qualify.)

From what I’ve learned:
RLS has stopped in all of the few cases I found on the site.
Breast cancer has responded to LDN.
RA sufferers report joint pain and swelling clears.
Improves Parkinson’s Disease.

Other things I've read in emails from LDN users that I wouldn't mind experiencing: 1) reports of strengthening bladder; 2) clears skin conditions; and 3) feeling happier. Claim LDN is a "feel-good" drug.

Instead of upping my Requip dosage yet again, I am going to try something new – LDN.

Rosie

ViewsAskew
Moderator
Posts: 16204
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Nothing is won if we don't take chances.

I was moved by your post, a bit inspired, really. Thank you for telling your story. I hope the LDN works for all of the above.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

RamblinRosie
Posts: 11
Joined: Fri May 22, 2009 8:01 pm

RLS and LDN

Post by RamblinRosie »

Thanks, Ann.

SquirmingSusan
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Location: Minnesota
Contact:

Post by SquirmingSusan »

I hope it works for you. I read about LDN about a year ago when my mother was diagnosed with pancreatic cancer. There were small studies that showed it as being helpful in delaying progress of that cancer. I was kind of hoping that my mom would be interested in trying it, but she wasn't interested in taking anything. It seems like if it does work for pancreatic cancer, then we would be hearing from famous pancreatic cancer sufferers about it.

Somewhere I read that studies showed it to be completely ineffective in people who had taken opioid painkillers on a chronic basis, even after a weaning period of up to a year. So I don't hold out much hope for it helping me.

Do let us know how it works for you.
Susan

RamblinRosie
Posts: 11
Joined: Fri May 22, 2009 8:01 pm

RLS and LDN

Post by RamblinRosie »

I can’t comment on famous pancreatic cancer sufferers. I have only been checking on breast cancer and have found several success stories.

I will post on the yahoo LDN group page your comment about LDN being ineffective on opioid users. I hope that study is wrong.

FDA approved Naltrexone 25 yrs ago. It is a generic drug, very inexpensive. I would think big pharmaceuticals wouldn’t make $ on it and therefore, aren’t testing it.

I just opened a new link; ldn4cancer.com Seems to have lots of info, e.g., news videos, testimonials, links to the Oct 2008 LDN Conference. I glanced at that and saw there were videos of the many speakers. Unfortunately, I’ve no time now to research more.

RamblinRosie
Posts: 11
Joined: Fri May 22, 2009 8:01 pm

RLS and LDN

Post by RamblinRosie »

Susan, Squirming,

I posted your comment on the LDN site. You wrote "Somewhere I read that studies showed it to be completely ineffective in people who had taken opioid painkillers on a chronic basis, even after a weaning period of up to a year."

I received this answer. "I don't think you will find any medical documentation on this, but it doesn't make sense. I can show you the story of my friend Vicki, who was on opioid pain killers for MS, for 10 years. She weaned herself off them over a short duration so she could take LDN. She has now returned to work. http://www.ldners.org/vicki.htm "

My RLS is terrible right now. Vicki's story gives me the determination to stay off that opioid. I only have until Thurs.

Signing off now in order to start walking. Rosie

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