Low dose Naltrexone

[leaves]

I think it is called immune reconstitution: when your immune system rebalances itself it's weaker for a while and pathogens stir up.
It is quite common, also with HIV patients that start treatment i believe. I also got it fom acyclovir : it gave me shingles...
I had a few days of misery but it went away.

 

[Jenny]

It could be IRIS leaves, but I don't think we have enough evidence to say that immune constitution is actually happening - I've got so much worse - I can barely walk from the pain and vertigo and still can hardly eat anything. If I carried on with the LDN I would risk getting worse still, and all this inflammation can be very damaging.

Jenny

 

[leaves]

Oh yes I am not saying it is not serious! Sorry if my post suggested that.
I hear you with the pain, mine was bad too: couldn't walk from the pain. Fortunately it went away but it was very scary at the time. Hope you feel better soon.
Epsom salt baths sometimes help a bit for relief for me.

 

[Jenny]

Yes, I didn't think you were saying it wasn't serious leaves :Retro smile:

I'm just thinking that the IRIS thing is just a hypothesis - if I knew without doubt that the immune system was repairing I'd carry on, but we don't really know what's going on.

I used to do lots of epsom salt baths - didn't seem to do anything.

Jenny

 

[leaves]

Ok ! Very true.

 

[Diva55]

Interesting that several of us have had similar symptoms since starting LDN. Diva - I had a similar rash a week after starting - itchy and slightly raised, on my face and neck. I stopped LDN 3 and a half weeks ago and I still get the rash occasionally and now its also on my elbows, wrists and knees. It only lasts an hour or so each time though. I've never any type of rash before.

I also got very severe overall pain - I've never been in so much pain before. Like Leaves the neck pain was very bad, and nausea, and I also thought I must have meningitis. This got even worse after I stopped LDN - haven't a clue what's going on.

I may at some stage start it again, but I want to improve a bit first. Am now doing immpower and minocycline!

Jenny

Hi Jenny
So sorry you're going through all this especially after you've stopped for so long.

My GP said the rash was chronic dermatitis. But I tried the usual anti fungal cream which normally worked and it didn't. He gave me a very stong steroid cream which I was reluctant to try. It has worked but I hate using it as my skin looks burnt.

The neck pain is very scary & it went to my jaw & caused extreme ear & teeth pain. "Interesting" that you, me & Leaves all got this.

Like you I've lost a lot of weight which was welcomed but the change in appetite is not so.

As LDN is an immune modulator from what I've read it can stir up old viruses, bugs, reactivate pains and generally make you crappy until the immune system settles. Althought MS patients get mostly temporary activation of symptoms it seems we are much more sensitive and get slammed.

With FM I'm in a lot of pain so any increase can tip me over the edge.

I'm with you on taking a break. I hope you improve soon.

 

[helsbells]

Is there a poll to say whether people think its helping/worsening/staying same or jury still out? i am trying to read all the thread but it is quite long then I get caught up in peoples individual stories and lose the thread and consensus anyway
My two penneth is the first dose I took had a good effect but i quickly got very depressed on it and fatigue so i started experimenting with Ultra low doses and in my case the jury is still out. It does something but stirring things up isn't always the same as feeling better and one of these days I would just like to take something that just makes me feel better

 

[jeffrez]

On LDN I developed a weird nickel-sized raised itchy, scaly rash on my outer leg right above the knee. It's not going away despite being off LDN for weeks. I've never had anything like this before. I went to my internist after a few weeks just to have it checked out, and it appears to be a kind of eczema or rash, thankfully nothing worse like psoriasis or fungus.

I've also developed an awful tendinitis in my left hand, wrist, forearm, and elbow, just from playing my guitar normally, as I always have and have never had tendinitis from it before. I might never play again. An achilles tendinitis I've had for 10+ years but was completely in check with no symptoms also flared badly again, and my joints started hurting. The day after going off LDN, the joint and tendon pains reduced a noticeable amount. They're still very bad - can't play, might not ever play again; limp from the achilles pain when first getting up after sitting a few hours, sleeping, etc. -- but the reduction was enough to tell me LDN was involved, if not an instigator.

LDN = chemical drug. Chemical drugs are unnatural to the body. I am really angry at myself that I let myself be drawn in to all the hype and take a chemical drug that can damage your liver and screw up your immune system. Before the rash and the tendinitis, after having no benefits after 4+ months, I even contemplated going off it, but I listened to one the drug apologist hypers who emailed me to say "it can take more time, give it 6 months or a year at least." So I decided to give it a few more weeks to see if I would get all the "benefits" everyone is hyping. Now I am wishing I listened to my own intuition instead of being swayed by the drug pushers.

I'd rather live and be tired than take pharmaceutical chemicals invented by a sick and unbalanced society. That just makes me no different than they are. Just sicker for it, usually. God only knows what this stuff has done to my thyroid antibodies, or what kind of other immune processes or activations it has kicked up or worsened (e.g, candida). But they don't seem to be settling down despite being off LDN for weeks. Maybe that takes 6 months to a year, too - or maybe it never corrects again. I'm glad some people appear to be getting benefit from it, but for me the stuff is like most other things from this culture and society: just another poison.

 

[willow]

I've also developed an awful tendinitis in my left hand, wrist, forearm, and elbow, just from playing my guitar normally, as I always have and have never had tendinitis from it before. I might never play again. An achilles tendinitis I've had for 10+ years but was completely in check with no symptoms also flared badly again, and my joints started hurting. The day after going off LDN, the joint and tendon pains reduced a noticeable amount. They're still very bad - can't play, might not ever play again; limp from the achilles pain when first getting up after sitting a few hours, sleeping, etc. -- but the reduction was enough to tell me LDN was involved, if not an instigator.

Very sad to hear this Mr Kite. Sending the best thoughts for recovery from this.

Personally speaking, I'm always grateful to be reminded to consider my treatment decisions carefully. Thank you.

 

[leaves]

Wow mr Kite
so sorry !
Thanks for sharing, ill be more careful.
I didnt know it was so chemical.

 

[Jenny]

Very sorry to hear this Mr Kite.

Might be worth describing your experience on one of the LDN websites, to counter the hype.

Jenny

 

[jeffrez]

Well, I don't think it's "hype" in the sense that it doesn't help anybody. I do think that some of the LDN supporters perhaps push it a little too aggressively, however, like that it can't do any harm. It's almost like there's a thinking that since the regular doctors don't do it and it's "alternative," it therefore must automatically be something good. Maybe it is for some people, but another thing is do we really know the long-term effects even in people who appear to be getting a good result from it? I don't think we do. Personally, I wish I had never taken it, but when you're desperate you sometimes aren't as cautious as maybe you should be.

Thanks for the sympathy, I only hope this can heal, but unfortunately it seems that tendinitis like this is very difficult to resolve even in non-immune impaired people who have normal energy metabolism. The fact that it has stayed around in my heel for so long, flaring up like this after years practically for nothing, has me really depressed that the same could be true of the hand. I've heard of "normal" people with wrist tendinitis not playing for 1-2 years, and even then they were never the same again. I can't even think of that - it makes me just want to go jump off the nearest bridge tomorrow.

Very sorry to hear this Mr Kite.

Might be worth describing your experience on one of the LDN websites, to counter the hype.

Jenny

 

[leaves]

How terrible for you. Not being able to make music is such a loss. Do not lose hope though, you may get it back, or find new ways to deal with it. Thinking of you.

 

[Jenny]

Mr Kite - I've had quite severe tendonitis in my elbow for long periods during my time with ME. At times I wondered if I would ever be able to lift anything again with my right hand. But it always clears up - I haven't had any probs for months, despite being bedbound with all my other symptoms.

Jenny

 

[jeffrez]

Mr Kite - I've had quite severe tendonitis in my elbow for long periods during my time with ME. At times I wondered if I would ever be able to lift anything again with my right hand. But it always clears up - I haven't had any probs for months, despite being bedbound with all my other symptoms.

Jenny

That's encouraging, thanks.

I just wonder how much LDN changes your immune system away from its baseline "normal," and how long it takes to go back, if it ever does. I tried playing a little last night for about 5-7 minutes with my right hand and with the strings lightly damped with my left, just to see if I could at least work on practicing picking while my left hand is out of commission, and last night and today my right elbow is now in bad pain and feels like it's on fire. I mean come on - I've played for 30 years, often for hours at a time, and never once even had a twinge there. My technique didn't just change overnight. This is ridiculous.

 

[Seeker]

"You can actually rub the Magnesium Oil right into the area where you are having the Fascia/Tendon pain and see if that helps.

Dr. Carolyn Dean, author of The Magnesium Miracle recommends that musicians (guitarists in particular) do this to avoid and get rid of their tendonitis pain from playing so much, so hopefully it will help you too."

Above is from: http://www.easy-immune-health.com/thank-you-kerrialso-question-re-magnesium-oil.html

 

[jace]

Glad it's helping you. To be able to get to 3mg within a month is great.

Reasons may be
I've only been floored with ME since March '09
I'm using the liquid, and absorbing it in the mouth, rather than swallowing and absorbing in the stomach
I put up with crazy nightmare rides a few times, at the start and also going from 1.5mg to 2mg
As a Doctor's daughter, I was taught to take medication at an early age
I'm lucky
ETA I was not on any pharmaceuticals before starting - I found them overall unhelpful, and replaced them with herbals.

Hels, I've put up a poll about LDN. I hope I got the options right. The forum crashed for me last night, so the starting post was all alone for a while, but all's ok now.

 

[Diva55]

I too use the liquid which I preferred to pills .

I've read that there' s a transdermal cream available which was designed for kids. Sounds good for sensitive people but I'm sure it's difficult to get hold of.

I've had a 2 week break due to trying to get my rash & virus under control. I restarted LDN at 1.5ml last night. I've not got any higher than 1.5ml but hoping within the next month I can raise it slowly to 2ml.

I read on another support board that someone with FM took 1-2 day breaks when she got bad pains and that when she got back to LDN the pain subsided.
Others have said not to take a break but reduce to a tiny dose to ensure LDN is still in the system.

It's so difficult to work out the best way of taking it - the dose to take, to take a break or not, what are side effects from LDN and what are "normal" flares. It's a VERY individual thing & I guess we have to work out what's best for us.

I'm sorry to read about people that it's not helped or even caused big problems but am cheered inbetween on how it has helped some.

Reasons may be
I've only been floored with ME since March '09
I'm using the liquid, and absorbing it in the mouth, rather than swallowing and absorbing in the stomach
I put up with crazy nightmare rides a few times, at the start and also going from 1.5mg to 2mg
.

 

[NickUmich]

So, I tried to get my doctor to prescribe LDN to me. After doing some research on it, he said he would not prescribe it to me. How do I go about getting a prescription for it now? Anyone have any suggestions? Thanks.

 

[readyforlife]

I started LDN a month ago, for the first few day's I felt great. Then everything went sideways!! Vertigo, headaches, nausea, my body felt heavy and I slept all day. I have taken tons of meds through the years and never have felt like this. I didn't have the dreams people talk about while taking LDN but when I quit taking it last week I now have the strangest dreams. I went back to my Doctor yesterday and he lowered my dose to .75 I started out at 1.5. I'm afraid to start taking it again but i'll give it another try. One possitive thing that came out of taking the LDN my hair was shiny and my skin ie. face and chest cleared up not a single bump or red spot.