LDN: new promising support treatment to CURE CFS??

Free-minded, all encompassing discussions either directly or indirectly related to methylation

LDN update: SERGIO

Postby serg1942 » Thu Sep 24, 2009 1:15 am



Hi all,

Because some of you, well in the forum or privately have asked me about how I am doing with LDN, I have thought I could do the same we are doing in my CFS-Spanish-forum, that is, a kind of “LDN-diary” ;-)

Well, I started LDN at 1.5 mg the past 31th of July. I past through my better 4-5 days since I am sick (housebound for over 5 years already), although I experimented also troubles with my sleep. The sleep problems cleared up in 1 week or so.

After these magnificent days, the incredible energy disappeared, but remained a good feeling, i.e., MUCH less brain fog, a need to take a nap, the ability of recovering better and earlier after pushing myself in excess, and other more subtle good changes.

Two weeks later I rose the dose up to 3 mg. BIG MISTAKE! Yes I felt again incredible the following days, but I couldn’t sleep at all, and this time my body didn’t get used…so after 5-6 days sleeping only a few hours, I was so tired, that I had to went back down to 1.5 mgs again, where I recovered my sleep immediately, and my improvements continued.

Over a month ago or so, at night, and suddenly, I went to hospital emergencies because of a very high fever (40ºC = 104ºF), when my normal Tª since I am sick had been 35.5-35.8 (95.9-96.6ºF), and the maximum fever I had had during these last 5 years sick was 37 ºC (98.6ºF), and I DID feel like if I had 40 ºC!

OK, I left LDN as I was hospitalized 3 days, because my fever didn’t stabilize, and I asked the “voluntary discharge”, as I wanted to stop taking the acetaminophen, to let my body fight, as the fever is a tool of the immune system.

So I went back home, and since then, I am everyday between 37 and 37.5 (98.6-99.5ºF), BUT I feel FINE (Well, “normal-sick”) at this Tª.

It was confirmed that I had passed through a infection, (high monocytes, protein C reactive, and liver enzymes), although they didn’t find the “culprit bag” (they didn’t looked for it very hardly, to say the true…). Well, After 10 days, I re-runned the tests, even with this still mild chronic fever, and my markers were all normal, so my body fought against some bag, and won! ;-) another good new is that my liver enzymes lowered too, so it wasn’t LDN which was causing their rise, but the infection.

Just after a week at home after having coming back from the hospital, I resumed the LDN at 2mg. This time my body did tolerate it very well, no sleep issues, and still feeling the gains of LDN.

5 days ago or so, I rose the dose up to 2.5 mg, and the day after, I developed the first stye I have ever had in my live (I am dealing with it right now! :-). SO It is very clear that my immune system is combating everything it encounters that was unable before…

Other overall gains since I take LDN are:

Less excitotoxicity: I know that, as I take 1/3 of the dose I needed of clonazepam (I took over 15-20 mgs daily and now 4-6…). This of course goes very close of the root of the illness, the oxidative damage!

Better sleep: Yes, when I get used to a certain dose, I sleep better, and deeper. I also still use to have the need of taking a nap after eating.

I think LDN has a hormonal effect too. In the book “The Promise of Low Dose Naltrexone Therapy” is said that the endorphins LDN raises act like hormones, I think remember by raising ACTH and other important intermediates between the brain and the glands…But I don’t think there are evince on that. Anyway, I think this is true, as I HAVE GAINED almost 4 KGS! I am lifting weight every 2-4 days, and afterwards I take a Far Infrared Sauna (FIRS), so this sure accounts for the weight gain, but it has not been until I started LDN that I have gained the weight (I think thyroids and adrenals may be involved)…

Finally, I eat chocolate and HAVE NO ACNE!! During all my life I had been prevented myself from taking the “8th marvel of the world”: Chocolate, cause I always developed a very unsightly acne. Well, this does not happens now. I firstly attributed this to FIRS, but after being 15 days off the FIRST, but on LDN, I still could take the “8th marvel”, so I think the shift of the immune system caused by LDN account for this fantastic change in my diet!! (I don’t want to think about the candida by the moment being, only enjoy! ;-).

OH! I forgot to say that I DO think also LDN HELPS to COPE with DETOX. Yes, after an acute cyanide toxicity from taking cyanocobalamine (that I could, BTW, find out, treat, and get over it, thanks to Rich), my liver is still a mess, so I couldn’t tolerate any supplement intended to restore the methylation cycle, cause I couldn’t cope with any detox. Well, I am slowly raising my tolerance to the folates and to the B12, and again, I attribute that to the homeostatic effect of LDN.

So, SO FAR, SO GOOD. Too nice to be true? Maybe? But why not? LDN has been shown to have incredible effects on Multiple Sclerosis and many others diseases, most of them neurodegenerative ones, where oxidative damage, neurotoxicity, poor immune system, inflammation, etc. are involved, so it is logical to think that this therapy can be a good help in our treatments. It has demonstrated a very good effect in FM in a double-blind-placebo study, and I think FM is another “face” of the same CFS-coin…

I know some of you are also on LDN, and it would be very helpful to know your experiences. So far, I am aware of Susan and Janis. I’d like to hear from others too!

Saludos a todos, (Regards to all)
Sergio

PS. I performed a thoroughly resume of the book on LDN I have quoted above in Spanish, as here (in Spain) people don’t use to manage in English, and I wanted to spread the word of this new possibly promising therapy. The point is that SUSAN (Sushi) DID a wonderful work of translating it into English, so in a few days, when I add a few new things I know on LDN, we will post this resume here. Maybe it can be useful, even having the chance of reading lots of good webs on LDN in English…
serg1942
 
Posts: 125
Joined: Thu May 14, 2009 7:41 pm

Re: LDN: new promising support treatment to CURE CFS??

Postby Sushi » Thu Oct 08, 2009 6:17 pm

Hey Everyone,

I have posted occasionally on my response to low dose naltrexone and I think I'll continue to post the changes I observe.

I raised the dose to 3.5 mg two nights ago (slowing titrating up to the recommended 4.5 mg). As has happened before each time I raise the dose, I woke up the next morning with a "Wow! I feel good today." I'd been feeling like crap the day before, so this time I really noticed it.

As this drug modulates the immune system, after a few days at a higher dose the immune system usually finds some neglected jobs to do (like working on low-grade infections) and I feel a bit sick till it clears up the mess. So I am now waiting for the "what next?"

But, I like this drug and so far so good.

Sushi
Sushi
 
Posts: 122
Joined: Thu May 14, 2009 7:33 pm

Re: LDN: new promising support treatment to CURE CFS??

Postby CFSMan » Fri Nov 20, 2009 8:04 am

So I take it you need a prescription for this stuff?

CFSMan
CFSMan
 
Posts: 44
Joined: Fri Sep 25, 2009 9:36 pm

Re: LDN: new promising support treatment to CURE CFS??

Postby Sushi » Fri Nov 20, 2009 3:43 pm

CFSman,

Yes, you need a prescription. You can either get generic tablets at 50 mg and dissolve them in distilled water, remove the dose you need (keeping the rest in a glass bottle in the fridge), or get it from a compounding pharmacy and the dose you want. If you get it compounded it is important to specify "not time-release."

Susan
Sushi
 
Posts: 122
Joined: Thu May 14, 2009 7:33 pm

Re: LDN: new promising support treatment to CURE CFS??

Postby Sushi » Mon Apr 19, 2010 3:45 am

Hi everyone,

As many of you know I have been taking LDN for about 8 months and have had significant improvements. Others with CFS are also getting help from LDN--but of course not everyone.

Just as a little dramatic touch, I have attached "before" and "after" photos of a patient who has been on LDN for about 9 months. The noticeable thing is the gain in weight and muscle. LDN has enhanced his ability to do anaerobic exercise, increased his stamina and ability to recover from exertion.

Have a look!

Sushi
You do not have the required permissions to view the files attached to this post.
Sushi
 
Posts: 122
Joined: Thu May 14, 2009 7:33 pm

Re: LDN: new promising support treatment to CURE CFS??

Postby VickieNJ » Fri Aug 13, 2010 5:30 pm

I want to start LDN but I currently take Tramadol for pain which is an opiod and therefore can't be taken with LDN. I am unable to sleep without something to control my pain. My MD is willing to change my pain medicine but doesn't know what pain medicines work for people with CFS. (I have tried NSAIDs and they don't work for me). Do any of you who take LDN also take something for pain? If so what? I can take your ideas back to my MD and she will decide what to prescribe. Thank you. Vickie
VickieNJ
 
Posts: 1
Joined: Sun Jun 14, 2009 5:35 pm

Previous

Return to ME-CFS Research (Experimental Research & Biochemistry)

Who is online

Users browsing this forum: No registered users and 1 guest

cron