CFS: Treating with Low Dose Naltrexone (LDN)

Discussion in 'Fibromyalgia Main Forum' started by begonia6, Jul 11, 2011.

  1. begonia6

    begonia6 New Member

    I have been treating CFS for over 20 years, prmarily whole foods diet, avoiding pesticides, supplements (fish oil, garlic, B complex, 3grams Vit C daily) + regular exercise. I take Lexapro for depression and Lunesta for insomnia. Recently found out about LDN; I have been on it for one week. From an LDN website, I used the formula (body weight X .03) to determine my dosage of 3.75ml in liquid suspension. I would like to hear from other persons with CFS about your usage of LDN, any symptom relief, any helpful updates.
  2. scampy1

    scampy1 New Member

    Hi just a quick note. I too have CFIDS for 20 years with FMS. Same path minus anti depressants, instead i take alprozalham for sleep and muscle relaxing at night. I took LDN a few years ago making the liquid and took it for over a year and did not see very much change in anything. In the end I would say its better for Fibro then for CfS, but since its non - toxic it cant hurt you so its worth a try. Didnt see any improvement in energy just maybe a little less inflamation in the connective tissues. I gave the rest of what i had to a friend with Crohns disease and it helps him alot. But you know that each person is different and you cant judge whats going to help another person its all hit and miss as you know.
    Ive also tried Ampligen for 18 months which helped for a while and then quit working. Not worth the money and effort thats for sure. Bottom line is this. Until they find the cause of CFS they will never find the cure. We must never give up though on trying new things that may help in order to have some normality and quality of life.
    Take care~
  3. nanc107

    nanc107 New Member

    New to group. Tried small dose of low dose naltrexone. Was told by pharmacist to work up to the 4.5 mg. I took 1 mg in water. After 4-5 days, my head felt like someone was squeezing it and felt pretty spacey. Is this is normal response? When I quit it, the symptoms went away.

    Any input would be helpful. Thanks.
  4. tgeewiz

    tgeewiz Member

    I tried it a few years ago, probably 2008.

    It only made me more tired.

    But, good luck with it.

  5. spacee

    spacee Member

    Started LDN and 1.5 compounded into capsule. Felt the spacey feeling. Went up to 3.0 capsule
    like it better. Still felt dizzy at yoga but can handle it.

    A friend told me that she didn't feel better til the 4.5. I plan to stay a 3.0 though (for a couple
    of weeks) cause I have a thing to do with my twin and can't deal with the doctor at this
    time. (He wrote the rx but no refills. I will say kindly that HE was spacey the day I saw him.
    Usually he is better.)

  6. mbofov

    mbofov Active Member

    I tried it I think about 2 years ago, I forget how long I was on it, but I had a very low tolerance for it. It did make me spacey and I had trouble functioning - e.g., we had a very bad rain and my roof was leaking and it took me about 2 days to realize I had better try to do something about it.

    My hope had been that it would help my immune system - I was getting sick all the time then, plus thought perhaps the CFS was due to a virus and so hoped the ldn would help, but it just didn't work for me.

  7. windingdown

    windingdown Member

    Hi are you still taking LDN?
  8. windingdown

    windingdown Member

    Sounds to me like you were using the 50 mg tablets to make your own in water At home you could've very well being allergic to the fillers in That big pharmaceutical pill I suggest get a prescription from your doctor and buy it from Skips compounding pharmacy in Florida He only uses one filler and it is something that you can choose That's where I get my LDN from Been taking it for nearly 2 years for my fibromyalgia
  9. Sandy10m

    Sandy10m New Member

    Hi Folks,
    I am a scientist who has CFS and FM (almost 30 years). Within the last 4 months I was diagnosed with Lyme (finally tested positive) through a new test by Advanced Laboratory Services, Sharon Hill PA, 855-238-4949. I'm pretty sure I've had Lyme almost my whole life, considering I'm from the Midwest and we were bitten by ticks all the time. I also tested positive for Epstein Barr Virus (EBV). This is mono, and apparently I've had 6 attacks of this. The Lyme and Mono have been in cohoots this whole time. Anyway, in Jan 2013 I had another "attack" of CFS, with no immune system, getting every cold and flu that came along. I decided it was time to give up on the supplements (I am nearly an expert in which ones to take) and take the meds.
    - My experience with LDN has been very interesting. I was taking long-acting thyroid due to low thyroid, plus adrenal support from Cytozyme. When I started taking LDN, even in smaller doses, I got wound up, jumpy, like I was on caffeine. Eventually I figured out the LDN was interacting with the thyroid/adrenal. I began to taper off both thyroid and adrenal, and the jumpiness went away. My doctor wanted me to get up to 3.0 mg LDN, but 2.5 mg was all I could muster. And now I am completely off the thyroid meds for the first time in years.
    - My sleep was not that great, but I anticipated that it would improve greatly on the LDN because of its moderating effect on endorphins, which then moderate the immune system. I started another experiment just recently with changing the dosage slowly. My doctor prescribed LDN in 0.5 mg capsule form from Dollar Drug in Santa Rosa CA. They'll ship anywhere.
    - So, I tried 3.0 mg. Ouch, no sleep at all, and I actually felt depressed the next day, really blah about everything. I went back to 2.5 mg with slight improvement and slightly better sleep. Then I went to 2.0 mg last night. Wow, I slept a solid 7 hours, for the first time in a long time.
    - I also had the headaches and achy feeling from LDN. That means your immune system is finally doing its job and killing the bad bugs. The achiness is the Herxheimer reaction, and your body can't clear out all the toxins from the bugs dying. You need to take something else to help you with detox, such as Glutathione and Quercetin. I also need to take the Lyme treatment of Banderol and Samento. You can google this, it has great results.
    - So, the moral of the story is, don't give up on the stuff. Get a truly compounded version of the meds because even a difference of 0.5 mg is going to mess you up.
    - I am also taking Epicor (through Prohealth) for immune boosting, and of course the Banderol/Samento to help kill the Lyme. Another thing is Vitamin D3, which I have been unable to take until taking the LDN and Banderol/Samento. Lyme and Vitamin D3 do not get along, so if you can't take Vit D3 supplements because of headaches/migraines, then you almost certainly have Lyme.
    - Also, for the Fibro, I use hyperbaric oxygen therapy. Google it and see if there is a place in your area. I found the pain was almost gone from going to oxygen therapy, probably because my muscles were finally getting the oxygen they needed to repair properly. Insurance doesn't cover it, though, so you're on your own. Try it for 2 weeks and see if you improve.
    - This was a lot of info, but I know what it's like to NOT know what the heck is going on. Maybe this will help someone. Good luck!