Wednesday, February 10, 2010

Update on My Low-Dose Naltrexone Treatment

I'm way, way overdo on this one! Lots of people have been asking me whether I'm still on low-dose naltrexone (LDN) and whether it still helps me. Looking back, my last update on LDN was April 2008, almost 2 years ago! If you're not familiar with LDN, I'd encourage you to read that post as well as this one.

Naltrexone is a drug that has been around for decades, approved by the FDA for use in treating alcoholism and drug addiction. Yes, I know this sounds strange so far! Naltrexone works by modifying the endorphin response in the brain. A couple of doctors discovered that naltrexone, when used in tiny doses, is an effective treatment for all sorts of immune system disorders, including MS, lupus, Crohn's disease, AIDS, and cancer. In very basic terms, the endorphin response causes a whole cascade of positive effects in the brain that help to normalize the immune system. All of this is explained in much greater detail (and much more effectively!) at the low-dose naltrexone website (the website is created and maintained for information purposes only by the doctors who pioneered the use of LDN and is not a commercial site). The results of studies using LDN in various immune system disorders have been amazing.

There have still been no official studies conducted of LDN and CFS (big shock, huh?), but we have a dysfunctional immune system, too, and it does seem to help some people with CFS, including me. There has been a small, pilot study at Stanford on using LDN for fibromyalgia, with excellent results.

As for me, I took LDN for 3 months in 2007 and got worse again when I went off it. In January 2008, I asked my doctor if I could go back on it, and I've been taking it ever since - two years now! As I explained in my earlier post on LDN, this is the only treatment in 8 years of CFS that has helped me significantly. During that same time period, I've also been on anti-virals - first Valtrex and now Famvir (I tried Valcyte earlier but had some serious side effects and had to stop - it's a very toxic drug). From what I've read, anti-virals and LDN work well together, though you can take either separately.

If you're a regular reader of my blog, you know that this past year was rough for me, especially the last six months. So, perhaps you're wondering - as I was - whether the LDN is still helping me. I got the answer to that in December when I ran out for a couple of days...I was worse without it and improved again when I went back on. My lengthy relapse has been due to my recent Lyme infection and treatment, plus exposure to various viruses this fall and winter, and I guess I would have been in even worse shape without the LDN.

I've talked to many other people with CFS who've tried LDN and have heard a wide variety of stories. Some, like me, have improved on LDN. Often, however, I hear from people with CFS who aren't able to tolerate LDN at its regular doses, just as many people with CFS are extra-sensitive to other medications. So, for most people with CFS, it is best to start out with a very low dose of 1 mg (or even 0.5 mg) per day. If it is tolerated, then you can raise the dose gradually. Unfortunately, some people with CFS can't tolerate it even at 1 mg. Typical side effects are vivid dreams and/or disrupted sleep. For most people, these effects go away after a week or two (I didn't have them at all). It's best taken before bedtime (the LDN website explains why).

Most people take low-dose naltrexone in a 3 mg dose. The LDN website says that 4.5 mg is the "optimum dose" for many people with auto-immune disease. I started at 3 mg and have stayed at that dose for 2 years because it works well for me. I tried going up to 4.5 mg and all of my CFS symptoms flared-up for the entire 10 days at that dose. I went back to 3 mg and felt good again.

I know of some people with CFS who have found that 2 mg or even 1.5 mg is their best dose. It takes some trial and error (with your doctor's help, of course).

You need a doctor's prescription for low-dose naltrexone. Not all doctors are willing to prescribe it because this is a relatively new development and an off-label use. Try sharing the information at the LDN website with your doctor. My regular family doctor won't prescribe it long-term and and my sons' pediatrician feels it's too new to try for my sons, so I get mine through my Infectious Disease specialist in NYC (she specializes in CFS).

Since regular naltrexone comes in 50 mg pills, you have to get LDN from a compounding pharmacy. They can provide either liquid or capsules in the dose you need. There are local compounding pharmacies in most areas, and the LDN website lists several that will ship LDN to you. I started out using my local compounder, but they could only supply me with the liquid form (which wasn't very convenient for travel). I now use Skip's Pharmacy in Florida - they're one of the ones listed at the LDN website. They have a lot of experience with LDN and are easy to work with. Just plan ahead for your refills, so you don't run out like I did!

Well, I guess that covers the basics. If you're interested in learning more, please read the LDN website. It is very, very informative. Anyone else out there using LDN or tried it?


Dusty Bogwrangler said...

Great post Sue. As you know I'm considering this route. It's harder in the UK because it is not a standard treatment for CFS over here, but Rachel at ChronicallyME has managed it. I need to get my doc onside tho, and he's very new to me. I'm not even sure of his stance on CFS yet.

I feel I could print this post and take it to him :-)

rachelcreative said...

I want to thank you for sharing your experience and knowledge. You helped me make the decision to try LDN and your advice has helped me a lot.

It's still early days for me and as you know it's taken me some trial ans error to find the right dose. I've been on LDN for around 12 weeks now and 2ml seems right for me.

I just wanted to add that for anyone in the UK the forums at LDN Reasearch Trust have lots of good advice on how to get a prescription and UK pharmacies that can supply it cheaply.

Thanks again and it's good to hear your update. So pleased it is working for you.

Sue Jackson said...

Jo -

Glad to help! Actually, LDN is not standard treatment in the US either - it can be hard to find a doctor to prescribe it. Personally, I think it's quite safe because it's such tiny doses of a drug long considered safe at higher doses, but some docs don't feel comfortable because this use of it is so new.

We need more studies!


Laurel said...

Very informative post. Thanks, Sue!

Shelli said...

Intriguing, as always! I'm one of those uninsured Americans everyone keeps talking about these days, so I don't think I could try it just yet. It is definitely something I'll bring up with my doctor once we finally get insurance!

Sue Jackson said...

Shelli -

Insurance is kind of irrelevant when it comes to low-dose naltrexone. That's something I forgot to mention, but it's extremely cheap because it's been around so long and is generic.

Mine costs $15 per month - so low that it doesn't even qualify for our insurance coverage.

Of course, you'd have to pay for a doctor's visit to get the prescription.


Lala said...

What an encouraging post, I am waiting for my LDN to come from a pharmacy after being compounded. Doctors here have not ever heard about it And it’s a not a registered drug in Poland so I just bought it on line in Canadian pharmacy. I am kind of excited and a bit worried as I am doing it without a doctor.

Thanks a lot Sue.

Mandie Green said...

Thanks for your blog. I've had CFS for 10 years and just started LDN at 1.5 mg last week. So far I feel a little different, too soon to tell, but something is happening.

I was curious since you and your two sons have CFS if it may be something environmental. Are there others in your area with CFS? I'm sure you've probably considered this already, but it's not hereditary as far a I know.

Anyway, best of luck!

Sue Jackson said...

Hi, Mandie!

Welcome, and thanks for taking the time to leave a comment.

Actually, CFS is definitely hereditary - or rather, the predisposition to it can be inherited. Several studies in the UK a few years back identified the exact genes involved.

CFS also has an infectious component, so it's actually very common among people in the same household. A NJ study showed people blood-related to someone with CFS were 3 times as likely to develop CFS as the general public, people in the same household but not blood-related were 8 times as likely to develop CFS, and those both blood-related AND in the same household (like my sons and I) are 11 times more likely to develop CFS. The infectious component is probably not easily transmitted or a lot more people would have CFS - it's more likely that people in the same household are just exposed to the same infectious agents.

Good luck with LDN! I hope it works well for you - let me know how it goes...


Mandie Green said...

Wow, I have never heard any of that. I thought the infectious part was paranoia and that it had never been proven. Very interesting. By infectious agent are you talking about virus' etc.?

Sue Jackson said...

Mandie -

Well, researchers have known for a long time that CFS often (always?) starts with some sort of infectious trigger - mono is a well-known one, but there are others that have been proven to trigger CFS as well, including Lyme and parvovirus.

Consistently, these infections cause CFS to start in 10% of the people that get them.

Very recently, though researchers discovered a previously unknown retrovirus called XMRV that might have a connection to CFS. I just posted the latest update on the XMRv research today here on the blog, but if you haven't been following it, you'll probably want to read about it from the beginning. You can click on the XMRV category at the bottom of today's post or type XMRV into the search box in the left column to read all of the updates on XMRV from the start.

Your comments have made me realize this would be a good topic for a new post!


Anonymous said...

Love your blog. Sufferer since '98 (when I was 16). I tried LDN for several years but it never helped. I hope others will have better luck. :)

Artist/Painter said...

Great site Sue! I just want to say I'm sorry that you and your family suffer with this most dreadful disease. I and a good friend of mine both suffer from this condition. I was just trolling around doing research (it's a habit now, looking for new news on the latest in treatments of CFS and FM (in my case I have both)). A doctor I had years ago who is fantastic, but I had to leave that city and him behind, but he did prescribe me this medication at the low dose. I think it was back around 2004-2006. I was just too leery of another medication that MIGHT make things better, as we had just tried a new treatment and it backfired big time. But now, after reading the latest and your blog, I just might try it again. Thanks so much for your work on this and updating your treatment and effects with us.

Sue Jackson said...

Artist/Painter -

You should definitely give LDN a try. It's rare for anyone to have a bad reaction to it, though you probably want to start with a very low dose, about 0.5 mg or 1 mg, and slowly work up, just because some people with CFS tend to over-react to meds.

Here are some newer websites about LDN with GREAT information on the latest research:

Good luck and let me know how it goes!


Lisa S said...

Thanks for your posts about LDN. I was wondering if your teens had tried it?

I have a 15yo tentatively diagnosed CFS. He has glutamate sensitivity and that led us to genetic testing and he has a lot of the polymorphisms tested for by Dr. Amy Yasko. He is on a restricted diet and takes a glutamate blocker as well as many supplements that help, and that has increased his functioning greatly, but he still struggles.

A friend pointed me toward LDN as it decreases neurotoxicity from glutamate as well. Plus, there have been some great results of LDN with autism, and many of the polymorphisms he has are also seen in autism. Added to that, I have a half-sister with MS, though we are not close so I don't know if she has tried LDN. Seems like it might be worth looking into more for my son. Any thoughts?

Sue Jackson said...

Hi, Lisa -

Yes, my 17-year old son is also on LDN now (just a few months so far). I'm not sure what effect it is having on him because he is severely incapacitated right now from his treatment for Lyme, bartonella, and babesia - that is sort of overshadowing anything related to CFS.

I also have a loved one with MS, my best friend. I have been trying to convince her to try LDN, but she is timid about trying new things (she is newly diagnosed). Hopefully, she will have a chance to try it soon.

I know of other teens with CFS locally who've had good experiences with LDN.


Anonymous said...

Hi Sue,

I wanted to ask. Do you still take LDN along with the medications you use to sleep?

Of course I'll speak to my doctor about it, but you haven't been told the medications conflict or anything?



Sue Jackson said...

Hi, Jason -

There were no interactions with any of my meds and LDN so yes, I still take the same ones. I think the only meds you can't take with LDN are opiates (pain meds) since LDN blocks them (that is its primary purpose when used at normal doses - for drug addiction and alcoholism). Definitely check with your doctor and give it a try - my son and I have been taking it for many years and it still helps!