Very sick on LDN, what to do?

[Kiwi Jack]

The doctor who prescribed me LDN and is considered the only LDN "expert" in my country said to me that an initial worsening is usually a promising sign that the drug would be effective. LDN is an immune modulator, for example it increases NK cell activity and numbers, so I would consider it plausible that it's doing exactly what you described. I started with 1/3rd of a 1.5 mg capsule (the max I could tolerate) and have stayed on 1.5 mg daily for a year now.

JES, what effect has LDN had for you?

 

[JES]

JES, what effect has LDN had for you?

For me the only obvious long-term effect has been improved quality of sleep, also perhaps slightly reduced fatigue and less nerve pain – a related condition I have. I think LDN can be particularly useful if you have some related autoimmune disease to CFS or chronic inflammation type symptoms of an overactive immune response, as LDN has been shown to reduce inflammation in some brain immune cells (microglia).

 

[Horse Crazy]

I am so glad this thread is here! I just tried for the first time 1.5 mg LDN at night for 3 nights. On the third night had bad flu like symptoms, headache, nausea, felt even sicker every time I ate something. For the most part have been in bed for the last three days. It has been four days since the last dose and I still don't feel right (meaning right back to my "normal" CFS feeling), although I am better. I will let everything completely clear and try again at maybe 1/5th of that dose in a month or so. Thanks for sharing.

 

[Iamlaura]

My Dr started me on 3mg and I am a 120 pound female. The first night was intense. I felt like I was tripping and had bad insomnia. The second night I slept like a baby, the third night insomnia again and now I am on day 6. I feel slightly sick and definitely don't feel like myself during the day... I wish I could lower my dose but I have capsules and it's not easy.

 

[Misfit Toy]

Yes, sweating. I have had the sweating and the worst pain. Pain all over. I am on the smallest dose. Smaller than the initial dose. Each dose change or switch, I have totally different symptoms.

 

[Mireille2701]

I am so glad this thread is here! I just tried for the first time 1.5 mg LDN at night for 3 nights. On the third night had bad flu like symptoms, headache, nausea, felt even sicker every time I ate something. For the most part have been in bed for the last three days. It has been four days since the last dose and I still don't feel right (meaning right back to my "normal" CFS feeling), although I am better. I will let everything completely clear and try again at maybe 1/5th of that dose in a month or so. Thanks for sharing.

Can you please tell me how long you felt sick? I quit after using 1 week 1mg at night.i'm sick now for 9 days.seems like all sorts of neurological symptoms.can hardly swallow,no strength in arms,extremely tired,hard to eat,all muscles cramp if i want to use them.strange taste in my mouth.can please some one help ne?my doctor hasn't got a clew.do i need blood research?it begins to scare me now.

 

[Mireille2701]

@Sushi, do you only stop for a couple of days? Because I know this lady who runs a support group, and she stopped for a while longer, and she said she noticed a difference. I believe she said she had more pain.

GG

PS She actually lives in Arizona most of the time, but does travel to MA to treat people and run her group here.

@Sushi what kind of symptoms fo you have? Raising your dose?