Friday, April 04, 2008

Low-Dose Naltrexone Treatment for CFS

For over a month now, I've been promising to write about a new treatment that has helped me considerably. Two things delayed me. First, I wanted to be sure I had all the facts straight before telling others about it. Second, about the time I felt ready to write about the treatment, I went through a period of not feeling quite so good anymore,and I wanted to make sure my earlier improvement wasn't just a coincidence. In any case, I'm finally ready to share my experiences and provide some information.

If you follow my blog regularly, you might recall that I tried 3 months of low-dose naltrexone last fall. I felt pretty good during those three months but wasn't sure whether it was due to the naltrexone. After that 3-month period, I had two terrible months with some very severe crashes. So, when we got back from our holiday family visits, I asked my doctor if I could go back on the naltrexone since it seemed to have helped. She told me that she's had similar feedback from other CFS patients and was fine with me going back on it, so she sent me a new prescription.

From January 1 through March 13, I had eleven good weeks, with only a single severe crash day the entire time. I track how I feel each day using a simple 1 - 5 scale, with 1 being great (almost normal) and 5 being severely crashed, unable to do anything but lie down and rest. For the past six years since becoming ill in March 2002, my average has pretty much stayed the same, between 2.6 and 2.9 (obviously there are good days and bad ones, but the annual average has stayed fairly constant). In January this year, my average was 2.1, and in February it was 1.7 - one of my best months ever.

Most evident to me was an increase in overall energy. I had more days when I felt like my old self. There was a clarity to my thinking that I hadn't even realized I was missing. I rarely had a sore throat, and, when I did, it was mild and didn't last long. I was able to start exercising regularly - nothing too heavy, but I could take almost daily walks and began some light weights.

I want to stress, though, that this is not a cure. I can certainly still tell I have CFIDS. I still need lots of sleep at night, still need my afternoon nap, and still have to be careful not to overdo. But within those limitations, my quality of life is much improved, and I'm able to do more. I got through our annual Mardi Gras party without crashing afterward. I attended a day-long writer's conference for the first time since beginning my writing career.

After seeing such improvement, I did some research on the internet and was pleasantly surprised to find an entire website devoted to the use of low-dose naltrexone (LDN) for immune system illnesses of all types. It's being used with great results for MS, Crohn's, AIDS, and cancer, with several studies to back up the results. There's a new study currently being conducted at Stanford on using LDN for fibromyalgia (that study is still recruiting patients). As is typical, there are no formal studies yet on CFS, but the website's description of how LDN works makes complete sense for CFS's immune system dysregulation.

Since mid-March, I haven't felt quite so spectacular (which is why I waited to talk about it). I now think a couple of factors are behind that. I started out on 3 mg of naltrexone which I got in a liquid form from a local compounding pharmacy (Naltrexone comes in 50 mg pills, so it has to be compounded to the low-dose form). After reading on the website that 4.5 mg is the optimum dose for most people, I switched to the higher dose in pill form, obtained from a recommended pharmacy at the website. For the next ten days, I had a sore throat almost every day and several crash days. I spoke with the pharmacy, and they suggested I go back to the 3 mg dose. I did that on March 20 and have felt better again. I also felt somewhat poorly this week, but my husband has also been feeling bad, so I suspect there's a virus floating around that has affected my immune system. Still, I never felt completely crashed this week. I had a mild sore throat, some aches in my legs but was still able to do some writing and get some things done while trying to take it easy.

So, that's my story. I'll continue to update my blog about LDN. I plan to stay at the 3 mg dose for awhile now but may try the 4.5 mg dose again at some point. I'm fairly small to begin with, plus there's that tendency for people with CFS to react strongly to medications. The good news is that LDN has almost no risks or side effects since it's such a tiny dose. Some people (not me) experience vivid dreams or interrupted sleep with LDN, but that seems to only last for the first week or so, when it happens at all.

If you're interested in trying LDN yourself, I encourage you to thoroughly read the www.lowdosenaltrexone.org website. It explains how LDN works, provides details of studies done to date, and gives very detailed information on dosing, compounding, and how to take it, as well as cautions for people with certain conditions or medications. The site was developed by a group of doctors who have pioneered the use of LDN for immune system disorders. I contacted several of them from the website, and they were very helpful when I had questions. I printed information from the website and shared it with my family doctor and my sons' pediatrician. My family doctor was excited by what she read and plans to try LDN for several patients with immune system illnesses.

If you'd like to read about the experiences of other people with CFS who have tried LDN, here are a few places to look:
So, that's the scoop. This is the first thing in six years of illness that has provided any significant improvement for me. If anyone else out here has tried LDN or decides to start it, please let me know about your experiences.

17 comments:

  1. Congrats on your success, and welcome to the LDN family, Sue. LDN is gaining more and more momentum thanks to bloggers like yourself. Three years ago there were only a handful of sites that reference LDN, and now there are literally thousands. If you spent a weekend digging around for LDN on Google, you'll find some outstanding success stories -- mostly from MS patients right now (because that condition affects so many people), but a few from Crohn's patients, Lupus patients, patients of some types of cancers, AIDS patients and -- lucky for me -- EDS patients (EDS = Endorphin Deficiency Syndrome). If you're interested in finding out more about how and why LDN works, look up some of the EDS stories related to LDN. While the other conditions I just mentioned are the result of one's immune system attacking a particular body system, such as the digestive system for Crohn's -- EDS has to do with the brain, which is where LDN does its magic. So if you read up on EDS, you'll find a community of very smart people that have done incredible amounts of research on LDN, brain chemicals & processes, depression, treatments, meds and other related topics. EDS is a terrible, cruel affliction; and because it's so understudied, MANY people have it and don't even know it.

    To give you a fundamental explanation of what EDS is/does: while some types of "depression" (which is a horribly generalized term for a host of brain-related conditions) can be treated with dozens of different SSRI meds, the brain chemicals that SSRIs affect (serotonin, dopamine, norepinephrine) are not the only chemicals in the brain. And so if you are deficient in a chemical that SSRIs do not address, then the "depression" continues because the SSRIs don't do anything for you. Some of the chemicals that people can be deficient in that SSRIs/SNRIs do not affect are the brain's endogenous opioids -- aka "endorphins." Unfortunately, this condition is not recognized yet by the traditional medical organizations. But the fact that LDN works on EDS patients is proof that it's real. So the more we can get the word out about LDN's effectiveness -- even if it's with people that have other conditions -- the more exposure and popularity LDN will get, and the more attention the medical groups will have to start giving to it.

    If you'd like to read more, there's a great blog that explains EDS in layman's terms. When you start reading it, you might even begin to realize that your Chronic Fatigue Syndrome is not your main problem, and that you actually have EDS. That's what happened to me. I've had Crohn's for 11 years, and when I started reading about EDS, I realized that Crohn's was not my "core problem" - it was a side effect of a much greater problem: endorphin deficiency. And when I started treating the endorphin deficiency, the Crohn's was cured. (I wish I could bold and underline that last part to draw emphasis.) It's the same thing with the people with MS that are taking LDN. They are not treating the MS, they are treating their bodies' deficiency in endorphins, which directly affect the immune system, thus curing the MS. It's quite fascinating. If you read enough about LDN, and the success stories, you'll quickly come to realize that it's only a matter of time before the media catches on, and this becomes a huge "breakthrough" (which we already know is.) In fact, it's just now starting to hit TV news -- if you go to the LDN site that you mentioned in your blog and play the video from WTEV Channel 47 in Jacksonville, FL -- you'll see the report. The title: "WONDER DRUG". Very fitting indeed.

    Anyway, here's the EDS blog I mentioned:
    http://prohibitionkills.blogspot.com/

    Good luck with the CFS and LDN. Be well.

    -Tom

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    1. Oh my god,I think this is what I have! I have been feeling pretty desperate of late due to years of cfs/me & long periods spent with the inability to feel enjoyment or pleasure from anything,but not feeling down or sad as in 'normal' depression.I actually jump for joy when I do feel sad as this is a welcome break from this endless monotony of boooooooooooooooredom! Do you recommend LDN then Tom? Helen

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  2. I'm going to check into this. Thanks for the report!

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  3. Sue,
    Just wondering if you still take the anti-viral, too, and this is a recent add-on to that treatment.

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  4. Hi, Sherry -

    Yes, I am still on anti-virals, too (1000 mg Valtrex daily). From what I understand, the two therapies are complementary (though you could try either on its own). I also read that Olive Leaf helps naltrexone work better - interesting, since I take olive leaf every day.

    Sue

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  5. Hi Sue, I am checking in to see how you are doing. I may be starting the Valcyte in the next months or so and wanted to pop on you. I have also joined blogge, have a Mac, and can now subscribe to your blog via RSS. :-)

    You talking about LDN is a funny coincidence, I just met somebody on Daily Strength with MS who suggested it to me for CFIDs/Fibro. I thought it was just another questionable therapy like Guaifenesin(sp? ) or the Marshall Protocol...but it sounds like it has helped you.

    Now I a wondering if I shouldn't try it first, it sounds more affordable and less likely to cause a Herx effect than the Valcyte.

    Anyways, thank you for keeping this blog and providing all this helpful info with links to real sound research and results. It's hard to find reputable info in regards to treatments on the internet.

    Big hugs to you and your family

    ~shell

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  6. I'm going to link to your post, if that's ok. If not (and why not?! LOL) let me know.

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  7. Hi, Diane -

    Yes, it's fine with em if you link to my post on LDN. Sorry for not replying sooner-

    Sue

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  8. Anonymous2:15 AM

    I have been dealing with CFS for over 20 years. I have learnt that my version of CFS is in fact adrenal fatigue that has dragged the kidneys down with it. Stress and EBV did this.These organs play a huge role in the energy cycle.

    Im taking herbs to help them,but Im going to try LDN and see if it helps.

    Ribose is an amasing nutrient. I have been using this and its amasing the energy it will give you. I couldnt believe how good i felt.

    It was like I was before i got this monster of a thing called CFS. But,unless you address the adrenals/kidneys,the energy you get from ribose will not last long...about 4 weeks as it puts stress on the adrenals/kidneys.

    But those 4 weeks were like feeling like an olympic athlete !..well compared to having CFS.

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  9. Anonymous12:31 PM

    hi, i would love to know HOW LDN helps with what symptoms of CFS/ME since i just don't need energy, i don't want to FEEL that deathly ill, weak, exhausted feeling everyday. that feeling that all you can do is lie in bed breathing. does LDN help with THESE? thank you

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  10. Hi -

    You've found one of my earlier posts from a couple of years ago. Here is a more recent update on LDN:

    http://livewithcfs.blogspot.com/2010/02/update-on-my-low-dose-naltrexone.html

    Yes, if it works for you, it helps with all of those symptoms. For me, it just makes all of my CFS symptoms better, and I have more good days and fewer bad days.

    Hope that helps -

    Sue

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  11. Anonymous7:22 PM

    Hi Sue

    SO happy to see you got relief on LDN, my Dr was not as nice as yours when I did research on LDN and took it to him he say Im his only patient with CFS and he has no desire to learn more about it. Im so upset. I am going to buy some Naltrexone from the internet and compound my own, a few fibro/cfs patients on the website I belong to use it with great success and some do compound their own. ONLY Thing is I hope its really Naltrexone Im getting!! UGH! GOD BLESS you for puttin out your trials of the LDN..

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  12. Hi I stared on LDN 2 months ago, I have been fighting fibro/cfs for 3 decades and 15 yrs of unDX thyroid. I felt the inflammation in my cfs damages knees get better first, then my fatique. I am so blessed to have found LDN, I mix it up myself from Nordic I buy from United Pharmacies on line. Easy to mix up find how online. I hope I continue to get better and better cheers.

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  13. Courtney Sokolik7:17 PM

    I just finished my 3rd week being on LDN for fibro. The first week and a half I felt great!! The second week and a half not so great!! Actually I feel terrible. I am currently taking 4.5mg. Do you have any suggestions?

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  14. Hi, Courtney -

    Yes, it sounds like your dose is just too high. 4.5 mg is a high dose, especially for someone with CFS or FM as many of us are sensitive to meds.

    For treatment of autoimmune disorders, the experts say 4.5 mg is the "optimum dose" but for many of us, that is too high.

    Yes, I still take LDN, 3 mg. I tried going up to 4.5 mg but felt worse for the entire 10 days - I went back down to 3 mg and immediately felt better again.

    Many people with CFS or FM start VERY low, at just 1 mg or so and go up very gradually, as tolerated. I know one woman who found the best dose for her was only 2.5 mg. So, I suggest trying a lower dose. Since you responded well at first, then you are probably close - try 3 mg.

    Good luck!

    Sue

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  15. Sue,
    My doctor down at the Klimas clinic just recommended this but only said one a day of the lowest dose, not the time. Many sites say nighttime but I don't do well with meds at night if they affect my sleep. It takes me half the day to get out of the drugged feeling. I have trouble with meds, so am nervous about this...major trouble..so am thinking about taking the first one or maybe the first few in the morning so I can watch its effects on me. IF I can handle it I'd like to keep it there to see if it works. Any feedback from anyone on this timing since your post?

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    1. Pris -

      Click on the link in this post for the lowdosenaltrexone.org website and read it thoroughly - it talks about the timing of the dose. There are reasons to take it before bedtime, having to do with the hormonal cycles in our brains - the idea, if I recall correctly, is for it to hit its maximum dose in the brain just after midnight - 2 am or so. That is supposed to be how it is most effective.

      Some people say it causes vivid dreams (I've had that since getting CFS!) but that effect fades after about a week. I had no negative effects at all and felt immediately better the very next day. People with CFS who are sensitive to meds should start out very low - maybe even 0.5 mg or 1 mg - but try the before-bed dosing for the reasons explained on that website. Give it 2 weeks and see what happens. Then you can gradually increase the dose, if you tolerate it well.

      Good luck and let me know how it goes - this is one of the few things that has helped me a lot, so i hope it helps you, too!

      Sue

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