Friday, January 15, 2010


Low dose Naltrexone

Would it work?

It's thought that the central nervous system is compromised in people with Fibromyalgia and Chronic Fatigue. Naltrexone is an anti-addiction drug in normal circumstances but in low doses it acts differently.

Stanford is preparing for a study of Low Dose Naltrexone as a treatment for Fibromyalgia and Chronic Fatigue. This is the first study of it's kind but this drug has been prescribed off label for the past few years.

It isn't a cure-all and not without side effects. 

Some of them are:

nausea & vomiting
joint pain
excessive muscle contraction
sore throat

Now, look at that list. I'm a little confused. If those are the side effects how would they know if it's working? A lot of those are the same symptoms that we feel with Fibromyalgia.  I know, in the Stanford study, that the side effects are rare and short-lived but there are people that will be on either side of the "average." Given my tolerance of medication I'll just bet I'd be one of those people.

Are the side effects worth it?

I have a hard time with drugs. Not to say that I don't use them to stay out of pain but the opiods are solid. The relief is there and the side effects are minimal. It's the drugs that make you weigh them on the balance bar to see if the side effects outweigh the benefits.

It's like Lyrica. Given the litany of side effects that there are who in the hell would put that in their mouths? I know everyones different. I guess that is a different view of the balance scale. For me, no fricking way. I think it's the weight gain that did it for me. I have enough self esteem issues without more weight gain. I've put on 20 pounds and I'm one of those all or nothing women. If I'm not a 10 I must be a zero and I don't need Lyrica to help that issue along.

A more natural road.

Then theres the whole nightshade issue. When I first heard about it I thought it was a new kind of curtain. I didn't have a clue that there were foods classified as nightshades.

Nightshades are a family of foods that include tomato, potato, eggplant, tomatillos and peppers as well as spices like paprika, cayenne pepper and tabasco sauce.

Nightshades contain a toxin that in normal conditions bodies process very well but given the compromised system in Fibromyalgia it is thought that by removing these from your diet it will help with your pain. These vegetables contain high levels of alkaloids that remove calcium from the bones.

Now I haven't seen ANY studies on this so I'm not sure if it's just a reach but I do know that certain foods affect people in different ways.  I can't be sure that it's not a food allergy. 

Part of me wants a dietary fix and the other part doesn't think that a nutritional avenue is the only way to go.

What to do? 

I'd love comments to hear what people feel about these two treatments.


  1. I have only been taking LDN since 12/22/2009 and already I am sleeping 12 hours at nite. I used to sleep only 3-4 hours. I have some shaking, but my brain fog is a teeny bit better. I cut out the nite shades too. It is since starting the LDN that I have finally felt better.

    It has been the best thing I have done in forever. Am off Lyrica too. And my mood seems to be lifting.

    Not everyone has all those side effects by the way, they are a list like all meds have. What do you have to lose?

    Go to and see what it says. It has only been 3 weekes and I am feeling better than ever in my life in 15 years. I find it wonderful.

    Hope you will give it a try. It has really been worth it for me.

  2. I have fibro and CFS. I have been on LDN since May, 09. I am also on the guaifenesin protocol for fibro - Dr Paul St. Amand, Los Angeles area. I take blood pressure for hypertension and Armour thyroid (from a compounding pharmacy) for hypothyroidism. I also take quite a few supplements. D3 & iodine & magnesium seem to be helping most.
    I am 68 y.o. I was dx with fibro and chronic fatigue syndrome approx 56 y.o. I have been having symptoms most of my life. They just were not recognized for what they fact, I was sent to a shrink by my primary at Kaiser HMO in LA. May he rot in hell. I had facial neuralgia at age 10 and it went on from there.

    Eventually I developed adrenal fatigue and came down with a list of auto-immune conditions in addition to the fibro and CFS: rheumatoid arthritis, gen herpes, vitiligo, bleeding gums, loose teeth, loss of hair, and on and on and on.

    LDN has definitely improved my situation. From night one I began sleeping seven, eight, hours instead of the usual three or four. My pain has lessened considerably. The first pain to go was the RA stabbing pain in both feet and hands.

    If there have been side effects, I have not noticed them as nothing comes close to the pain and suffering I have been enduring most of my life. In my experience, fibromyalgia is progressive. My advice to anyone who has it is to do all possible to stop it from - trust me - you ain't seen nothing yet.

    Two first cousins and one second cousin - all female, on my dad's side - have fibromyalgia. Dad's mother had rheumatism which is one of the old names for fibromyalgia. So, from my point of view, it definitely runs in families.

  3. I agree that this disease is progressive. I started with CFS in the 90's. My daughter had a mild form of CFS and controls it with diet and exercise but she hasn't had a great deal of stress yet either. So you like the LDN? I've been burned so much on supplements, doctors and other crap I'm down to taking thyroid and pain meds.

  4. I have been taking LDN for nearly a year for my fibromyalgia. My life has definitly changed for the better. It was a gradual process, but my daily pain levels dropped from 6-8 with pain drugs to 0-3 without any, and the only side effect I had was more dreaming. The preliminary trial at Stanford University said that 6 out of 10 participants reported marked improvement in their fibromyalgia symptoms while taking low dose naltrexone. No other fibromyalgia drug has come close to that. I highly recommend that people at least try LDN. What have you got to lose?

  5. Now to find a doctor in Las Vegas.....

  6. Go to and ask if anyone knows of a dr in your area. One of the people involved in this group has a list of doctors in different areas. Keep checking back with this group and you'll get lots of info, too. It may not all apply to you but is good to know. It's amazing to me, for instance, how we all respond so differently to so many different things.

    Also - a quickie solution would be to call compounding pharmacies in your area and ask for names of dr's who are prescribing LDN. I don't know what your insurance situation is but LDN isn't usually covered. Skip's Pharmacy in Boca, Fl is very reasonable for the capsules. I couldn't even to begin mixing the tablet as some people do...Tho that is definitely the cheaper way to go.

    LDN is not a stand alone solution. That is stated over and over. You must find other solutions to partner with LDN. I, for example, am on the guaifenesin protocol, too. Time - and tinkering - is involved.
    Don't get discouraged.

  7. Thanks for all your help! I've had chronic fatigue since 91 but after the initial severe flare I controlled it unless I was under extreme stress. Once it morphed into Fibro nothing is under control and I'm just tired of horrible doctors. :-)

  8. The side effects you list were worked out during research with full dose Naltrexone. Not everyone taking low dose has side effects and those that do mostly have vivid dreams and sleep disturbance as the most common although constipation is frequently reported.

    Depression, fatigue, agitation and stiffness can be signs of too much or dosing too frequently. Some people do better skipping one or even two days between doses or a lower dose.


    is a new group for discussing starting very low, and skipping one or two days between doses.

    is a list created for Links and Files to LDN
    information including scientific studies in humans, conference videos and radio interviews.

    There is more than one approach to taking Low Dose Naltrexone and a variety of opinions about doing regimens. The Bihari Protocol is not the only one out there although on some lists it is all you will hear. As well as the idea that gluten sensitive or candida is to blame for any and all issues. I have not found this to be true upon further investigation.

  9. Thanks for all the comments. I appreciate them all!

  10. The LDN has shown proven mechanisms to realign the immune system. Those of us with auto-immune problems can use all the help that we can get with our immune systems.

    I had not seen that list of side effects, the only one generally acknowledged is a slight sleep disturbance the first week or so. I started LDN May 1 of 2009 and I cannot tell you the wonderful improvement that has happened. It started right away, but has continued to improve over the months, starting with a lessening of the fatigue and mental fog.

    As others have said, "what have you got to lose?" It costs less than most co-pays, is proven safe at 100 times the dose and can help a whole list of problems, since it does not work on any of those diseases, but boosts ones own immune system.

    I sincerely hope that you give it a try and report back on its effects on you! :-)

  11. Thanks so much for comment! Now I just have to find a doctor in Las Vegas that works with this protocol. Las Vegas doctors have been notorious for dismissing Fibromyalgia.


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