Low dose Naltrexone

Diva55

Diva55

Member
Messages
164
Location
UK
Jenny said:
Now at my worst - bedridden for one year - all over severe pain, severe weakness (can only walk about 20 yards), chills, sweating, painful glands, stabbing pain behind eyes, nausea, dizziness, vertigo, severe flu-like malaise. Mostly bedridden, symptoms fluctuate randomly.

I posted a link to an article earlier in this thread which suggested that LDN was more effective with those with a high ESR. Mine is low, at 4.

Still waiting for XMRV home draw.

Jenny
Click to expand...
Hi Jenny
I'm sorry to hear you are going through such tough times. Hope it improves for you soon.

I have FM and was also diagnosed a few years later with CFS. Although I personally think that the CFS component is part of FM. I had a viral onset for FM.

Still waiting for my XMRV home draw as well.

I read that article about those with a high ESR doing better on LDN. My ESR is definitely on the low end at 6 with a range of 1-30.

I took LDN for a number of months and had to keep reducing the dose as I suffered some weird side effects – most I got up to was 1.5mg but was as low as 0.1mg at one point. There’s a view that some people do well on a minute dose as little as once a week!

BUT I got some great benefits as well – falling asleep quickly and getting good quality sleep. I also got some nice flashes of energy. As for pain – very little improvement but I’ve read with FM pain it can take 9 months or longer to see an improvement.

I’ve only stopped as my GP refused to prescribe it for me and I’m deciding what to do next. The miracle of better sleep is an incentive to find a way to carry on.

I know some people who were taking LDN have stopped posting - I hope people join this thread as it’s good to know the positives and negatives.
 
S

Snowcat

Messages
21
I have found LDN helpful, though not in the way I hoped.

My CFS started with Mono 22 years ago. XMRV status unknown. I have low natural killer cells so wanted to try LDN to see if it would raise them. I started with 1.5 mg and raised to 3 after about 8 days. It did interfere with my sleep for the first couple of months, but I compensated by taking sleep medication, which I do intermittently anyway. I don't plan to go any higher than 3 mg as I am tiny and am going on the weight dosing schedule in the back of the book The Promise of Low Dose Naltrexone Therapy. I've been on it now for 9 months.

Unfortunately, LDN has not increased my NKC count. But it unquestionably impacts my morning mood. Getting out of bed after sleeping 8 hours and still feeling like I was hit by a truck was one of the hardest things for me about CFS. The endorphin increase from the LDN causes me to wake up happy-ish despite still being tired and makes starting the day much, much easier. It also helped with chronic shoulder pain.

Lastly, I have not been cold-or-flu sick since I started taking it, but it's not uncommon for me to go a year or so without getting sick, so can't say for sure if that's related to the LDN. Other than the initial sleep problems, I did not have any negative issues with LDN at all.
 
C

chitra33

Messages
2
Yesterday I FINALLY found a doctor that is familiar with CFS and
prescribes "low dose naltrexone." I have been trying for four months to get
information like this. I've been going to my doctor for 20 years and I'm really
ticked off at him. For four months he has done nothing to help me in my
quest!!

I finally called a "compounding pharmacy" not toooooo far from me and the guy
said "YES" he made it up and "YES" he had customers that ordered it and that
he would look in his data base and find one of the doctors!!!! HE DID! And I
have an appointment in March. If I didn't have so many other appointments
and obligations (and sick days!) I could have gotten in to see him sooner. I
will let you know what I find out about it!
..........................................................
grocery coupons
Harddisk Recovery
 
Min

Min

Messages
1,387
Location
UK
Can't remember if I posted or not, but LDN,even at the tiniest dose, sent my pain levels through the roof and also stopped me from sleeping at all. I tried to persevere with it but had to give up after a few weeks.
 
C

Cloud

Guest
chitra33 said:
Yesterday I FINALLY found a doctor that is familiar with CFS and
prescribes "low dose naltrexone." I have been trying for four months to get
information like this. I've been going to my doctor for 20 years and I'm really
ticked off at him. For four months he has done nothing to help me in my
quest!!

I finally called a "compounding pharmacy" not toooooo far from me and the guy
said "YES" he made it up and "YES" he had customers that ordered it and that
he would look in his data base and find one of the doctors!!!! HE DID! And I
have an appointment in March. If I didn't have so many other appointments
and obligations (and sick days!) I could have gotten in to see him sooner. I
will let you know what I find out about it!
..........................................................
grocery coupons
Harddisk Recovery
Click to expand...

Great idea talking with a pharmacist to track down a good CFS doc. Glad you found one.
 
leaves

leaves

Senior Member
Messages
1,193
Great idea chitra! BTW May I ask why you have links to advertisement sites in your signature:confused:
 
I

Indica

Messages
9
Location
Ansbach/germany
Hello, Sushi
This is valuable information.
Thanks.
smileynormal.ico
 
voner

voner

Senior Member
Messages
592
I stopped my trial with LDN because of an intolerable increase in pain symptoms, flulike pain, neurological/allodynia pain, and an increase in muscular trigger points and associated nasty neck shoulder and upper back, etc. pain It also bothered my sleep patterns.

History: 15+ years of symptoms. no idea of onset -- it seemed to come from actual “repetitive stress symptoms” … but who knows? Initial symptoms were FMS - pain, no fatigue. Fatigue and immune system symptoms increased over a period of years. Now ME/CFS/FMS. Not much fancy testing… I’d have to look up my esr rate… probably invalid by this time -- too old.

One thing I'll say about LDN: it was about the only thing I've tried that dramatically changed by symptoms -- unfortunately for the worse. In retrospect, this was good information.

Anyone else with experiences with LDN and their symptom/clinical test history?

I'm also curious if anybody hasn't reviewed the slides/lectures from Dr. Mikovitz, Dr. Nancy Klimas lecturer and the lecture by Dr. Light of Utah -- are they discuss how hormones impact cfs and/or XMRV…

Also, Anybody read the book written by the woman who was “cured” by LDN??
 
J

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
I started on LDN a week ago.

I had a sudden onset of CFs that started in 1991.

I have started at 1 mg/ day, after reading all 57 pages here. I have been taking it in the evening, but will switch to mornings, as I seem to be waking up at 2 or 3 AM every day now. So far, things are going fairly well. The effects seem to be somewhat similar to the antidepressants that I was given years ago. In my case, the pain I live with has decreased. I find that I am not taking a pain killer as soon as I get up, I seem to be sleeping better, I am more relaxed, and I do seem more tired during the day. The tired feeling is diminishing as I the days go by. I don't plan to increase the dose until I am very comfortable with the current dose.

I obtained my Naltrexone from an internet site, and mixed one tablet with 50 ml of pure water. I take 1 ml of the solution to get 1 mg of LDN. I seem to be pretty tolerant of drugs, but I would suggest a smaller starting dose for those that are not. Increasing the amount of water would make it easier to measure small doses.

So far, I am pleased with the way things are going. I notice that I am able to drink more water without having to get up in the middle of the night. This is a good thing, and a totally unexpected result.

If anyone is interested, I will be glad to post my progress as time goes by.

John
 
Hip

Hip

Senior Member
Messages
18,161
I have tried LDN, and it does help with energy levels, etc. One of its side effects that I noticed, however, is a blunting or deadening of emotions. CFS can cause your emotions to become feeble, frail or flat anyway, so I did not like it that LDN made this worse. Perhaps this deadening of emotions will not happen to everyone. But it is something to look out for with LDN. Apart from that, I would rate LDN as a fairly good and cheap CFS therapy.
 
Sushi

Sushi

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jstefl said:
So far, I am pleased with the way things are going. I notice that I am able to drink more water without having to get up in the middle of the night. This is a good thing, and a totally unexpected result.

John
Click to expand...

Thanks John,

I have been taking LDN for over a year. I had diabetes insipidus before taking it. (Nothing to do with diabetes--means you pee out too much water for complex reasons. Dr. Rich Van Konynenburg has explained the condition well).

I used to have to get up numerous times in the night to pee. Now this condition seems to have normalized. This is an important symptom to get rid of!

I am one of the lucky ones for whom LDN is a winner.

Sushi
 
J

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
Sushi

I have noticed the same thing. I used to avoid drinking water after noon, because I really hate getting up in the middle of the night. Now that I am on LDN, that is no longer a problem. Since drinking water is am important thing to do, I feel that it would be worth taking LDN if that was the only benefit.

I have been taking LDN for five weeks now, and am gradually getting used to it. I started at 1 mg, and just recently moved up to 1.5 mg. I tried 2 mg, but I guess that I am not ready for that much yet.

I started taking it just before bedtime, but have switched to noon, and find that that works much better for me.

I also am feeling less stressed and less pain. I have almost stopped taking painkillers since I started LDN. My sleep is improved, and I wake up feeling much better than before.

John
 
J

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
It has been two months now and I am still trying to understand LDN.

I started out taking my dose in the evening. At first that worked great, but soon I couldn't get to sleep. I am now taking it at noon, and find that it seems to make me more sleepy during the day. I have the time to nap during the day, so I will keep taking it at noon.

I have been all over the place with my doses. I started at 1 mg, but that became too much. I have been taking either .5 or .75 mg per day. It seems to have a cumulative effect on me, so when the symptoms build up, I drop the dose. I raise it when I start feeling better again. Even these minute doses seem to have a beneficial effect.

I am almost able to get thru a day without any Tylenol. If I stop LDN for a day, the headaches come roaring back.

I mixed a new batch of LDN and water, this time using 100 ml of water with one 50 mg pill. This makes it easier to measure small doses. I would suggest starting on very small doses, and working your way up. If you have a sensitivity to medications, .1 mg may be a good place to start.

I am trying to work my way up to larger doses, but the effects of overdosing are bad enough to cause me to back down. After two months, the .5 to .75 mg dose seems right for me. I am very slowly getting comfortable at this level. In the mean time, the benefits of the very low doses are enough to keep me going.

John
 
Sushi

Sushi

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jstefl said:
I have been all over the place with my doses. I started at 1 mg, but that became too much. I have been taking either .5 or .75 mg per day. It seems to have a cumulative effect on me, so when the symptoms build up, I drop the dose. I raise it when I start feeling better again. Even these minute doses seem to have a beneficial effect.
John
Click to expand...

Hi John,

I have been taking LDN with good results for over a year. The dosing seems quite individual, but some people don't seem to "clear" LDN as fast as others and it can build up in the body. These people find it works better to take their dose every other day--you don't want it to build up as then your receptors can be blocked for too long.

Maybe try taking a bit higher dose, but every other day? Just a thought as others have found this is working better for them.

Best wishes,
Sushi
 
J

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
Sushi:

I will try a larger dose every other day. I can handle larger doses for a short time, then it seems to build up and cause problems. I have been able to use 1.5 mg for a day, so that is where I will go next.

John
 
D

dotdot

Messages
15
Location
London, UK
I started taking LDN about a week ago.
I got a prescription from my lovely GP, who even faxed it through to Glasgow for me. The LDN then arrived in the post.

The recommended initial doseage level is 1.5ml, which I took the night it arrived. Oh dear! Palpitations, nauseous, dizziness, extreme brain fog during the night, then barely able to move - leaden limbs, dizziness and constantly falling asleep the next day - awful, horrible, scary!

The following night I dropped the dose to 0.5ml, no bad effects at all, and the facial pressure and pain that I've had for many months seemed to go.

2 nights at 0.5ml, then I upped it to 0.6ml for a couple of days - bit sleepy, bit foggy-brained, and about 20 mins of palpitations at night, but otherwise nothing bad. I've now gone up to 0.75ml - still a bit 'fog bound' and palpitation-y but nothing worse. Still clear of the facial pain etc, and I think, maybe my legs are feeling a bit less 'tight' - I tend to get a lot of calf cramps.

Will creep up to 0.8ml tomorrow, and see what happens.

Hurray! I'm having dreams again - major plus - I seemed to stop dreaming when the ME started.

It does cause sleep disturbance at the moment and I've been avoiding bedtime because of the discomfort of the palpitations. Hopefully I can get round that, or maybe it'll sort itself out in time.

It's not a wonder-drug, so far (about 1 week in, lol), but it's definitely an improvement not having the facial pain and pressure, and, it's often accompanying, dizziness and vertigo.

So, I'd say start at much lower than the recommended initial dose and work up. If there are no bad effects, bump the dose slightly every couple of days?

Trace
 
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