Monday, October 26, 2009

First Three Days on Low Dose Naltrexone (LDN)

The liquid version of LDN arrived on Friday. Eager to start I took a full 3 ml (which equals 3 mg) at about 9:30 Friday night. That was a mistake because I was up the entire night finally falling into a fitful sleep at about 6:30 Saturday morning for 2.5 hours. I started doing some research although it was hard to take in with after a week of poor sleep followed by a night of no sleep.

Here's what happened though. I was starting in on a big crash again on Friday feeling very "viral" (beyond exhausted, chills, sweating, etc). Saturday even though I didn't sleep there was no trace of the symptoms I felt the previous day. I also felt a shift in my mood. I felt like I had a bit of energy too in spite of the poor sleep. And it seemed like it helped my cognitive functioning a bit.

I decided to take 3 mg again on Saturday but this time I took it at 3 pm. I had difficulty sleeping Saturday but for a different reason. Saturday night I woke up with a lot of pain around an ingrown toenail. I was bummed because I knew it was infected. The previous 5-6 months I've had a very low grade infection and only in a small spot. It would go away once I soaked in it epsom salts a couple times per day.

But just like what occurred when I started the simplified methylation protocol it seems the LDN might have shifted my immune system which brought the smouldering infection to a full blown one which is a good thing in terms of maybe my body will finally get rid of it now. By Sunday my toe was an angry red and swollen along the side of the nail. It was also very painful. Sunday night the entire toe was red which raised my anxiety level.

Today I was able to get in to see the podiatrist thank goodness. This morning the toe had some pus and blood. The podiatrist couldn't even touch one part of the toe because it was too painful so he shot me up with a local anesthetic and trimmed aboutu 50% of the toenail away. I happened to glance at my toe and was surprised at the amount of blood there was. Not the best moment to have glanced at it but I didn't faint. He put me on Cipro which I'm not a fan of because it can cause permanent tendon damage. I'm also a little worried about my gallbladder. Going through lyme treatments last year caused my gallbladder to become inflamed. It hasn't been the same since so I'm hoping it will survive a couple weeks on Cipro.

Getting back to LDN-I took 2.5mg yesterday afternoon and slept a tiny bit better last night but was awakened early this morning with bad anxiety and a wired feeling. Clearly starting out at a dose of 3mg is too much for me. I think for anyone who is sensitive to medications its best to start at a low dose and work up to it. So far, I've not had huge sensitivity issues with meds so I was surprised.

Today I'll take 1.5 mg and see how that goes tonight.

What I've been reading about LDN has been encouraging. Based on my response so far I think this is going to bring me more improvements so I'm feeling encouraged.

I don't know if this is related but I noticed yesterday that I have swollen and painful lymph nodes right near my armpit. I'm a little concerned about this because its a new thing and I've lost about 15 pounds in the past 7 weeks. I'm struggling with my appetite again and I don't like it so I'm trying to eat small meals throughout the day.

I haven't really noticed anything from the Artemisinin. I'm now on a 7 day break from it. It's kind of funny to me that I'm back on lyme treatments (Cipro is used to treat Bartonella and Artemisinin for Babesia) but I'm not treating lyme or its co-infections. It will be interesting to see what happens while on these two lyme treatments that aren't for lyme.


Sue Jackson said...

My lyme doc put me on Artimisin (sp?), too, and I never reallynoticed much effect.

So glad to hear you've started LDN! Definitely, start very low - lots of people with CFS need to start at lower doses than what is usually recommended. I didn't experience any of the sleep disturbance, but most say it only last a week or so (still, I know, a long time if you're not sleeping well!).

I ended up at 3 mg and have been there for about 2 years. I read on an LDN list that the "optimal dose" (not for CFS specifically) is 4.5 mg, so I tried going up but all my CFS symptoms got worse. I went down to 3 mg again and felt great again.

I hope LDN works as well for you as it has for me - be patient with the dosing and start small. Let us know how it goes!


Jo said...

Ouch! Hope your toe gets better soon. I'm watching your experience with LDN with interest.

Lori said...

Yowsa - you're a brave brave woman to look at the toe. It made me shiver just reading!

Glad to hear you're working with the meds. I'm going to have to research LDN. They haven't given it to my daughter, but maybe it's because she's younger?

Renee said...

Glad your toe trip to the doctor went okay..brutal though...yikes!
Hope things balance out quickly for you with the LDN..

Anonymous said...

Iodine or dmso would have taken care of the toe without a trip to the doctor. Cipro is hardly called for.

I started ldn at 1.5 mg and it disrupted my already disrupted sleep. I had either fragmented sleep or none or highly entertaining dreams. After 2 weeks this all was gone and it normalized my sleep in a way nothing else except GHB had done.

That lasted about a month. I am now up to 3 mg ldn, feel great, but the sleep has returned to my pre ldn insomniac levels.

Ldn is normalizing immune systems. What a fantastic substance. It stopped my psoriasis after a month. What a bonus! I had a patch on my eye for 2 years and it (and the rest) is gone.

cfswarrior said...

Hi Sue-

Yeah-the Artimisinin seems to be ineffective for much of anything.

I too am glad to have finally started LDN. I had to stop it for about 5 days because I was too wired and anxious and the sleep disturbance was bad. I just started again yesterday at .5mg and will slowly work up to 3.

I'll keep you posted (no pun intended).


cfswarrior said...

Thanks Jo! I'll keep you posted as well. : )

cfswarrior said...

Hi Lori-

I think my doctor wanted to treat infections first before trying me on LDN. There is a yahoo group for people with me/cfs on ldn. I do know there are teens on LDN.

I tried so hard not to look at my toe but in my effort to be polite I was looking at my podiatrist as he was talking and my eyes fell to my toe. I'm just glad I didn't pass out right there and then.

cfswarrior said...

Thanks Renee! I hope things balance out soon too. I have a lot of repair work to do after this high dose of Keflex-thrush and all that again.

cfswarrior said...


I'm curious about the Lodine? That's an NSAID that I used to take for my back. Did you mean a different med? I've never heard of DMSO but am interested in finding out more about it.

Thanks for telling me about your experience with LDN. It's very encouraging. Bummer about the sleep though. I just restarted the LDN yesterday but at a much lower dose.

cfswarrior said...

PS-Unfortunately the Cipro (which was switched to Keflex) actually was called for. My podiatrist does not believe in using antibiotics but this was a relatively bad infection and was already starting to spread so thankfully he put me on a strong antibiotic. My body has a difficult time clearing infections on its own....

Otherwise, I do understand and share your concern.

Zannie said...

I know this post is 6 years old... but I found it because I was searching for information on starting LDN. I'm in my first week (I've taken 1.5mg for 5 nights now) and having a slightly rough time with it. I feel well physically and am sleeping well but have been having severe mood swings and general emotional upset. At any rate - I also wanted to comment on the artimisinin. I took it for almost a year. I never noticed any direct effect on the way I felt... (it didn't give me more energy, that type of thing). But I do believe that it helped on the cellular level somewhere because I was treating lyme and babesia... I had been treating it for 4 months when my doctor added in the artimisinin and a week or two later was when my antibiotics and antimalarials seemed to start working, suddenly (finally!). So my night sweats and fevers finally went away!! So I think the artimisinin did help with my antibiotic therapy. However, now that I am beyond that point, I no longer take it... I'm just treating the remainder of my arthritis (my only real symptom left) with the LDN... Anyway, so the comment was really about the Artimisinin. For those of you taking it but not noticing a difference - if you are taking it with antibiotics, stick with it for a while, I feel like it helped my antibiotics work better. :-) (but I don't feel like it did anything for me on it's own though).