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I had an appointment with my AP doc yesterday. We had a very good discussion, but I must have asked him too many questions because he started assigning me homework. He asked me to look at a website for low dose naltrexone (LDN) http://www.lowdosenaltrexone.org/
http://www.lowdosenaltrexone.orgIt apparently caught his attention because of its risk/reward potential (i.e. low risk for potentially high reward). I admit the site reads like one of those wonder cure supplement sites, but I?m willing to give it a little slack since my doc has shown interest.
The way he described was a low dose of naltrexone taken before bedtime temporarily suppresses the production of endorphins. This stimulates the body to produce (over-produce?) endorphins, which is turn is a net positive for the immune system.
Does anyone have any experience with LDN? Any thoughts?
Todd
Todd:
One of the experienced AP doctors in southern California (not Dr. F) recommended Low Dose Naltrexone to a scleroderma patient. After this patient told me about this recommendation (along with AP) I looked into extensively (well as much as you can on the internet). I was sold and wanted to try this therapy for Jess, along with AP. Well, her AP doctor wasn't open to learning about it so I had no way to get the RX, and had to let it go. If you have a doctor willing to work with you on LDN, and you can learn alot about it from the various websites on this subject, then you have all you need to make your decision. If it would have been available to us, Jess would have been on it!!!!
If you do it, let us know what you learn!
Cheryl Ferguson
Someone posted about this on another board recently, and none of the usual partypoopers produced anything to shoot it down. On a board where people still question antibiotics for h. pylori, that really surprised me!!!!
I'll be interested to hear about your experience, if you try it.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Todd,
My Dr brought LDN to my attention about 8 months ago. We decided to try it. I had to lower the intial dose after one week, as it kept me awake at night. After 2 months, with no noticeable effects good or bad, we decided to stop it. I understand for some LDN is a good thing, and I feel it's worth a try.
Let us know what you decide.
Hi
Im on LDN 4.5mg and have been for 4 months..
Like Donna..I cant say anygood or any bad has come of the treatment…as ever it seems that the treatment works quite spectacularly in some …while others the effect is milder and in others like me and perhaps Donna ..not much at all..
I would echo Donna and say it is worth a go..
Im going to continue for another 3 months just in case it kicks in.All the best
I looked into LDN last year, when the doc that my hubby goes to for the clindy IVs suggested looking into it. There were a few things that stuck out when researching it. It supresses your system; most of the anecdotal stories were either “it didn't work” or “it worked for awhile, then stopped working, or body got used to it and it had no effect”. There was also a statement that said something like . . .”it tricks your body into thinking . , .” That was not what we wanted – if it suppresses immune system, etc., how different is that from prednisone that no one wants to be on? If you are considering it, read as much as you can on it before deciding. The doc that suggested it was thinking more on the lines of “it seems relatively safe” (as far as side effects) and is “worth a shot”. We voted against it. Good luck in your decision.
Thanks to all who replied. I've decided to try LDN and see what happens. I'll post my experiences with it somewhere down the line.
Todd
Todd,
I am new here but just wanted to give you some information that I have. I have been using ldn since December of 2007 for sjogrens. I am receiving my pescription from one of the leading Doctor's who is doing the pioneer work in ldn clinical trials.
Ldn is a very slow working drug it does not supress your immune system it works to help regulate you immune system. What the soul purpose of ldn is for is to prevent/stop further disease progression. The intention is not to remove exsisting symptoms HOWEVER 1/4 of people are reporting large symptom relief. That being said it can 9-12 months minmum for you to notice any results. There is a lady who I am good friends with who is taking it for MS. She had no real symptom relief for 18 months ( she was not progressing either) then when she had her 24 month MRI her lesions on her brain 18 month MRI were finally gone.
So it can take time but I wanted you to know that it won't give results over night so your not discouraged.
Angela
Angela is right. I have RA (seronegative) and have been on LDN since early December. It does NOT suppress your immune system. The theory behind it is that people with autoimmune disease or immune system issues have much lower levels of endorphins in their systems than “typical” people. Endorphins are opiates that WE produce ourselves, and one of their jobs is to regulate our immune system. Think about how much exercise can help with immunity and you will get the idea. Exercise creates lots of endorphins. What LDN does is temporarily (i.e. for a few hours) block the opiate receptors in your brain so that when you produce endorphins in the middle of the night, your brain doesn't register that they were produced and you make a lot more. These stay in your system for the rest of the day, but the LDN only affects you for a few hours.
I got fantastic results with LDN right away – a huge reduction in pain, for one thing. Over time I also experienced a lightening of my mood and a marked reduction in getting sick, even when exposed to lots of infections from my kids. Over time the results for my RA have not been as good, as I have had some return of old symptoms. However, I am still better than I was before I started taking it and highly recommend you try it if you get the opportunity. A good information source is http://www.lowdosenaltrexone.org and you can join a Yahoo group from there where people will give you names of doctors in your area who prescribe LDN.
I did have the sleep-disruption side effect, but as promised, it went away over time.
Good luck!
Judy
Anyone else try LDN? For those that did try did you try it along with AP?
Here is a good youtube from a LDN conference:
I think you really need to watch the video of the 4th annual LDN Conference in USC,
especially the testimony of Dr Burt Berkson MD – this New Mexico doctor had very interesting comments on how well LDN works for R.A., Lupus, and the one Dermatomyositis case on a New Mexico rancher with an extreme case of DM (said to be a terminal case of DM) took LDN for a year, and recovered. He also uses alpha lipoic acid in combo.with LDN.
Well testimonies from conferences and websites are different then first hand testimonies which is what I was hoping others would have..
Not to say I DON'T believe them but the ones from people I know (ie: from this forum) would hold more weight with me.. But that is just personal opinion.
I have been using LDN for 2 weeks so it is too early for any firm conclusion. It is not meant to be a stand alone treatment for rheumatic diseases, but can be a good adjunct treatment.The theory and research seems sound and it is cheap and easy to try. My sleep pattern has always been real bad, so the sleep disruption that LDN causes is of only minor concern to me. I have Psoriatic Arthritis and will continue to use some level of Minocycline to treat it regardless of the outcome of the LDN use. I am using it to try to lower my Minocycline use to the M,W,F pulse protocol, which I had not been able to do without an unacceptable level of pain increase. I saw no increase in pain levels over the last two weekend while skipping Minocycline Sat and Sun, which I consider a very good sign. Also my knees and shoulders improved in their range of motion. At this point I am optimistic that LDN is having a positive effect on my immune system. My PCP wrote my script for the 50mg pills which I dilute 1 pill in 50ml of distilled water and take 4.5ml at 9pm bedtime. I will continue an update in my progress if there is an interest
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
I was using ldn for 14 months about a year ago when I first got sick. You MUST ensure you have no yeast issue at all or it will not work for you. If you have yeast even dormant as soon as you go on LDN it will bring it out and you will likely feel worse.
Just an fyi there are alot of sites about it. I researched it for a long time before I took it.
Angela
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