Low dose Naltrexone

[*GG*]

To andreamarie

I see a Dr Rothfeld in Arlington, he is on the co-cure website www.co-cure.org and he also came up on the ACAM website. I have been seeing him for a little over a year. He recommends all kinds of alternative treatments.

He prescribed me LDN around the beginning of September.

Do you attend any support group meetings? There is 1 every 1st Tuesday (in Boston) of the month and I am going to try to attend this week. I have a follow up sleep study that night, so I will have to leave early if I make it!

 

[Uno]

Ldn!

Hi guys

I have been on Low Dose Naltrexone for two and a half weeks now. I began on 1.5ml and am now up to 3ml of liquid naltrexone.

Before I begin with it's effects, I'll summarise my story. I have suffered with immune system problems and constant infections since birth and pre M.E. Since the onset of M.E my immune system has become virtually non existant. One doctor said I also have Primary Immunodeficiency Disease but my G.P won't refer me to anyone. I have had 6 courses of antibiotics in the past two months. I cannot leave the house (even for ten minutes to get a paper) without picking up an ear, sinus, lung/chest, throat or skin infection. I have also had 8 outbreaks of Shingles since December 2007. These infections continually lingering in my body plus the festering HHV virus have rendered me housebound with virtually no energy.

Since being on the LDN I have had days where I don't need to sleep in the afternoons, I find moving about a lot easier than I did pre LDN. My legs seem more fluid and less like a lump of Iron.

I have picked up another infection and was rushed to hospital yesterday - the first infection since the LDN (I get them every two/three weeks) so am going to be interested to see how my body fights it.

I definitely feel a few percent better but still am very poorly, I think immunology is the way forward with me but yet to see anyone other than mental health idiots. xx

 

[sarahg]

I have the bottle! 1.5 mg doses. I have been wanting to start it, but my sleep has been so poor and short that I am scared to start without some solid quality sleep time first. I am optimistic about how it will go, it seems that the side effects are manageable and not severe, but I am worried I will stop if I am already sleep deficient when I start. I get inreasingly worn down, crabby and out of it as my sleep is reduced and I have been in a "bad sleep mode" for about a week.

What I was wondering is if there is anything known about possible drug/supplement interactions at such small doses as these?
I am particularly curious about immune globulins, other things that impact the immune system ( mushroom extracts, thymic protein, olive leaf extract, etc) and muscle relaxants like cyclobenzaprine. I know this went through my docotor and the pharmacy, but I have also learned over and over not to trust their thoughts on the matter.
Has anyone trying it here had interaction problems with any drugs or supplements?

Also, how long did it take for your sleep to get back to normal after starting?

 

[*GG*]

SarahG

I started with night time dosing and now do daytime dosing because I do not sleep well either!

 

[Marylib]

sarah g

When I first took it, I did so in the daytime, as it can cause insomnia. But it made me sooo sleepy I switched to nighttime. That was okay for a few weeks, but then it made me wired at night again.

I may try it again when (hopefully) I am doing better, but I am not one who can endure much side effect stuff.

 

[oerganix]

How is everyone doing on LDN?

I'm hoping to try this soon, so I'm wondering how you all are doing with this?

 

[Marylib]

not at the moment

I'm hoping to try this soon, so I'm wondering how you all are doing with this?

I may try it again one day, but I think, ironically, I will have to wait until I am better. Was kind of rough on my system.

 

[Sushi]

I'm still doing really well with it. I have finally reached the recommended dose of 4.5 max and it continues to help me a lot. I can now sleep without medication for the first time in years and have more energy.

I'll keep taking it unless something changes.

Sushi

 

[perovyscus]

Naltrexone releases cortisol centrally vis a vis communication with the adrenal gland. It's causing immunosuppression. I know how it works for pain, I think I'm just demonstrating the MOA of the symptom release.

My hands shook and I had a priapism.

Didn't seem to be the right avenue for me.

 

[Marylib]

Good news

I'm still doing really well with it. I have finally reached the recommended dose of 4.5 max and it continues to help me a lot. I can now sleep without medication for the first time in years and have more energy.

I'll keep taking it unless something changes.

Sushi

That's good. Hope you keep improving!

 

[oerganix]

Glad to hear it!

I'm still doing really well with it. I have finally reached the recommended dose of 4.5 max and it continues to help me a lot. I can now sleep without medication for the first time in years and have more energy.

I'll keep taking it unless something changes.

Sushi

These are exactly the symptoms I hope to get help with.

Did you ramp up the dosage pretty quickly? I read on another LDN site that the orginal doc (Bavhri?) who espoused LDN for MS has said he was mistaken that everyone needs to start low and raise the dose little by little. He is now advising MS patients, at least, to start with 4.5 mg and then back off, if it is too much to start with. Some are reporting that works for them, others have to start low and work up. As usual, we each have different needs and reactions.

perovyscus, sorry to hear of the bad affect it had on you. I recall Cort joking that priapism might be worth it, but I know that it would be horrid after a short time. This might be another aspect of how XMRV affects the sexes differently, if it turns out to have such a strong influence on the disease process as the current excitement anticipates.

 

[Sushi]

Did you ramp up the dosage pretty quickly?

I needed to start low. I started with 1.5 and took nearly 3 months to get to 4.5. I only increased the dose by .5mg at a time to avoid sleep problems and I only increased after I was sure that all the "changes" in my body had settled down. Also, as I was using some other therapies at the same time, I didn't want to up the dose when anything was going on as a result of the other therapies.

But....we are all different!

Best wishes,
Sushi

 

[Christopher]

I'm glad some of you are having good experiences with it. May I ask as to how you sold your doctor on it? Did you print out literature from the http://www.lowdosenaltrexone.org website?

Thanks!

 

[Marylib]

getting LDN

Sorry Christopher, can't help you here. I am one of the lucky few who have a CFS specialist. She takes care of the whole country! She understands this illness and was williing to let me give LDN a go.

I am sure I would never have been able to get it otherwise.

Good luck, m'boy!

 

[Sushi]

May I ask as to how you sold your doctor on it? Did you print out literature from the http://www.lowdosenaltrexone.org website?
Thanks!

Hi Christopher,

I came to the doc's with printouts from that site, but she already knew about it and had another patient on it. I was lucky. But when I called around to different compounding pharmacies comparing prices, they all said that a lot of docs were prescribing it. So if your doc is a hard sell, you might call a local compounding pharmacy and ask which docs are prescribing it.

Good luck,
Sushi

 

[Christopher]

Thanks guys. I printed out a s-load of stuff, studies, news articles. Unfortunately, none of the studies pertain to CFS directly, but I'm hoping my dr. will see the lack of side effects and be willing to try it.

My appointment is tomorrow AM, so I will let you know how it goes.

-chris

 

[cfs since 1998]

I have been hearing about LDN for at least 6 months now but haven't been interested until recently, because of the XMRV findings. I have read that LDN is quite useful in HIV/AIDS, so I have come around and this is definitely something I think is worth pursuing.

 

[dsdmom]

Chris,
Not sure if these will help but they are good -

Stanford study on LDN and fibro (not cfs, but at least closer than MS)
http://snapl.stanford.edu/research/ldn.html

Another site with info about LDN:
http://www.whitakerwellness.com/our-therapies/low-dose-naltrexone-ldn/

Good luck!

 

[sarahg]

For those of you who are taking LDN- did you wait until you had had a brief time of decent sleep or did you just jump into it? For about 2 weeks, maybe more I have been gearing up to start taking it but my sleep has just been so awful I can't bring myself to make it any worse. I really thought this would be my week and then last night I was up until 1:30 and right now I am nowhere near tired. My sleep is weird in that I tend to go through phases of different sleep issues or sometimes nearly none. I am aparently, inconveniently, in an insomnia phase at the moment.
I guess I just feel like I should have some solid "good sleeps" behind me before I mess it up. Is that just irrational?

 

[Sushi]

For those of you who are taking LDN- did you wait until you had had a brief time of decent sleep or did you just jump into it?

Hi Sarahg,

I have not been able to sleep without medication for years...and years! So when I started LDN, I just took a wee bit more for a couple of nights. Then each time I upped the dose (which I did very slowly) I had about 2 nights with worse sleep and just took a bit more medication.

The interesting thing is that as my dose got higher, I stopped experiences sleep disturbances on upping the dose. Now, at last, I am up to the recommended 4.5 mg and have been able to stop sleep meds entirely--yeah! The higher my dose was, the more I could cut down the meds.

Course taking sleep meds isn't great, but you might have something gentler at hand--melatonin, L-theanine, GABA etc. Most people have very transient sleep disturbances when they start LDN. What I did get each time I raised the dose was an improved immune response--which is what I wanted, but in actuality it meant a few sicky days while the improved immune system routed out old infections.

Sushi