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Very sick on LDN, what to do?

Vincent

Senior Member
Messages
126
Location
Baltimore, Maryland USA
I've been on LDN for 8 days now and I'm really sick with flu-like symptoms: naseua, chills, feeling too hot, and just plain 'feeling bad'. My suspicion is the LDN is for lyme or coinfections(testing not done yet) and or CFS. Having contacted the dr I am still waiting for a reply, the pharmacist suggested going down to just one pill instead of three at night. I took one pill last night and I actually feel worse :-(. My prescribed dose is 3 x 0.5mg pills.

Is this side effect or effect? Has anyone else had a similar experience? Eating food makes me sick, doing anything other than laying down or sitting still makes me sick. I haven't been shopping in a week because I feel so bad I do not want to go. Help!
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I'm just curious did you start on 3x.5? I know you are supposed to go really slow. LIke .5 for a week. then up it by .5.

And I know this won't help but see if you can find a grocery that delivers. It's the only way I get food.

Sorry you feel so bad. I'm starting LDN next month. Ugh.
 

Vincent

Senior Member
Messages
126
Location
Baltimore, Maryland USA
Yes the RX is for 3x0.5, Dr just replied to my message and said to lower to 1 and see if that helps. I just did that last night and I feel worse today :-( . I'm too sick to cook anything and I'll just get carry out or not eat at all. Lunch this afternoon was halted half way because it was making me feel worse.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I've been on LDN for 8 days now and I'm really sick with flu-like symptoms: naseua, chills, feeling too hot, and just plain 'feeling bad'. My suspicion is the LDN is for lyme or coinfections(testing not done yet) and or CFS. Having contacted the dr I am still waiting for a reply, the pharmacist suggested going down to just one pill instead of three at night. I took one pill last night and I actually feel worse :-(. My prescribed dose is 3 x 0.5mg pills.

Is this side effect or effect? Has anyone else had a similar experience? Eating food makes me sick, doing anything other than laying down or sitting still makes me sick. I haven't been shopping in a week because I feel so bad I do not want to go. Help!

Hi Vincent,

I'd guess this is LDN doing what it is supposed to but you have perhaps taken too high a dose. When I first started it and every time I upped the dose I would get those sorts of symptoms. My thought is that the immune system was able to see and attack pathogens that it had ignored previously.

A friend ended up in the hospital with a temperature of 104 because he initially took too high a dose.

If I were you, I'd stop the LDN for a couple of days and then restart it with a very low dose, say .5 mg.

Best wishes,
Sushi
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Hi Vincent,



If I were you, I'd stop the LDN for a couple of days and then restart it with a very low dose, say .5 mg.

Best wishes,
Sushi

I agree. YOu probably still feel bad because it's still in your blood stream. I would go off for a few days or more. Then start with 1 .5 in the morning with food.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
I had difficulty starting out also. I ended up starting at .2 mg every other day, and very slowly worked my way up. I stopped at 1.5 mg per day, as, after several years, a larger dose still causes problems. I feel that I get benefits from the 1.5 mg dose, so I am not concerned about getting to the "magic" 4.5 mg dose.

We are all different, and we need to find what works for us, and not worry about someone else's opinion of what we need.

I second the opinion to stop for a couple of days. After that, find a dose that you can tolerate. As time goes by, you will be able to increase the dose. Overdosing doesn't promote faster healing, just more pain.

John
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I'm going to just try 1 0.5mg pill tonight and through this weekend and see how everything goes. I was not prepared to feel this bad and it really caught me off guard.

I forgot to add that the immune symptoms only happened until I got up to about 3 mg. They lasted about 5 days every time I raised the dose. I found I needed to raise the dose very slowly--it took me 4 months to get up to the full dose and now I have dropped down to 3 mg again as that seems to be the dose that suits me now.

Also, it is OK to stop LDN and restart it. When I travel, for instance, I stop it for a couple of days as the form I have needs to be refrigerated.

Sushi
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I agree. YOu probably still feel bad because it's still in your blood stream. I would go off for a few days or more. Then start with 1 .5 in the morning with food.

LDN is supposed to be bery short lived. Are you sure you got the right kind? I would think you did, but perhaps you didn't?

GG

PS Mine says Naltrexone (Short-acting) (D-F) 4.5 mg. I was concerned about this aspect when I first started LDN over 3 years ago. I also started mine during a Fibro flare (Pain 9 tob10, had Lidocaine infusion it was so bad!), so I was miserable already, but I think I had issues with LDN also, and my Dr told me to lay off for a few days. My starting dosage was 1.5mg, and I went up by 1.5 mg increments. FYI
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I forgot to add that the immune symptoms only happened until I got up to about 3 mg. They lasted about 5 days every time I raised the dose. I found I needed to raise the dose very slowly--it took me 4 months to get up to the full dose and now I have dropped down to 3 mg again as that seems to be the dose that suits me now.

Also, it is OK to stop LDN and restart it. When I travel, for instance, I stop it for a couple of days as the form I have needs to be refrigerated.

Sushi

@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

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Our bodies are crazy, so who know how long stuff stays in our system?

It is also not just the half-life but how long the immune response takes to calm down.

@ggingues I have never stopped for more than a few days, so I don't know what would happen if I did.

Sushi
 

Seven7

Seven
Messages
3,444
Location
USA
I'm going to just try 1 0.5mg pill tonight and through this weekend and see how everything goes. I was not prepared to feel this bad and it really caught me off guard.
I have to get off for a few days when I overdo. If you had so strong reaction is ok to break for a few days, so your immune system can get back to what it can handles, over driving is as bad as under. Then try to start again at a low dose. I used to struggle because I thought if I would stop it woudl slow down recovery but you gain more at the end, to this day (one year on it) I have to skip some days when I get overactive (I feel very sleepy from LDN or brain feels kind of numb). Just a thought.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
Hi, your starting dose is too high. You can even go as low as 0,10mg or 0,25 mg if needed to start again from scratch. It will take a week or two (sometimes up to a month) and then you can up to 0,25 or 0,50mg.

You don't need to rush LDN, your body will be healed and it takes a lot of energy and time. You can't rush things.

All the best.
 

undcvr

Senior Member
Messages
822
Location
NYC
It does sound like a detox/Herx/IRIS reaction. U wud have to go off it and then come to it again when all the symptoms are cleared. That is the only way to find out if it is working for you, if you are able to take it again and not have those symptoms reoccur.
 

Vincent

Senior Member
Messages
126
Location
Baltimore, Maryland USA
The Dr. got back to me but did not answer my question. I literally don't know why I'm taking this stuff. After I mentioned during my last appointment that I wake up feeling terrible every morning she suggested I try LDN.
 
Messages
50
Location
Canada
As I read these threads and others I notice a lot of variation in response to LDN. I too have had a severe reaction to my initial 2 weeks on LDN. I started at a higher dose, took a few days off, restarted at .5 mg then 1.5. I've been suffering a severe reaction these last few days; headache, nausea, joint pain, sweats, and more. It feels like the worst flu ever, man am I hurting!

I'm highly encouraged by the positive stories of LDN, they give me great hope. After 14 years of ME/CFS, hope is all I have. Without the benefit of more research and large scale clinical trials, these forums are all we have. So everyone's feedback and experience is very helpful and greatly appreciated.

I'm not a medical professional but I wonder if these initial bad reactions are some form/type of a herx reaction. If it was an allergic reaction to the drug itself, I'd assume that would happen immediately after the first dose, and symptoms would not last so long after stopping. But if LDN initiates some type of immune system boost, causing more pathogen destruction, subsequent toxic dumping into the bloodstream and more immune reaction, then that would fit with a herx theory. And if that's the case, it would bolster the theory of an underlying primary pathogen cause like a virus, bacteria, protozoa, epstein barr, xmrv, lyme, etc etc.

Truth is, I don't know anything for sure and the more I read it appears no one else does either. But I'm encouraged by the ongoing research, forums and discussions like this.

To anyone out there suffering from an initial bad reaction to LDN, you have my sympathy. I appreciate how horrible you must feel. I've stopped the drug 2 nights ago and this is my 3rd day feeling excessively bad, although this morning is less severe than yesterday, and I now feel this will pass. Hang in there, it will pass, you're not alone.

Personally the advice that resonates with me about this initial negative reaction is to STOP taking the drug completely and allow all symptoms subside. After a severe reaction, it makes no sense to continue taking the drug at any level, even a dramatically lower dose. But again I'm no Dr and I only have the experience of one. For me personally I still have great hope this drug will help me. I'll wait till I feel fully recovered from this event and re-start dosing at .25 mg every 3rd day for at least a few weeks before increasing the frequency and dose by .25 mg, and stop completely at any sign of distress.

Hope to you all.
 

JES

Senior Member
Messages
1,320
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.