Low dose Naltrexone

[Frank]

mixing LDN, i'm wondering if it's a good way, altough dosing doesn't have to be very accurate. http://www.youtube.com/watch?v=bOekLFIvR7I

 

[oerganix]

mixing LDN, i'm wondering if it's a good way, altough dosing doesn't have to be very accurate. http://www.youtube.com/watch?v=bOekLFIvR7I

The original site I read recommended the bottle or jar be brown to exclude light, but I don't have any idea whether this is really required.

Re the method shown in the video, I've basically been doing the same thing, EXCEPT the cutting of the pill. It totally isn't necessary. I usually mix up a new batch the night before I need it, so I don't know how long a whole pill takes to dissolve, but it was designed to dissolve in the stomach, so it must be pretty fast. I guess if you need it within two hours, cutting the pill might be a good idea, but it can be crushed right in the foil pack first. I know this because...some of the pills I received in the mail had already been crushed in shipping. So pressing with the back of a spoon or the handle of a table knife would probably work just as well as a pill cutter. No need to spend the money for one.

I've also discovered that 4.5ml of solution comes out to about 1 teaspoon, for those of using that system of measurement, so I no longer do the more complicated procedure of sucking up water 5 times, etc. I just measure out 3 Tablespoons x 3 (=9 tsp) and add one more tsp, to get 10 tsps of water and add the pill into a small opaque bottle that originally held hydrogen peroxide. I shake it up and refrigerate it. At dosing time I measure out 1 tsp of solution and that's my 4.5mg of LDN.

For 2.25mg of LDN, one would take 1/2 tsp of solution; 1.125mg LDN would equal about 1/4 tsp.; 0.56mg LDN in about 1/8th tsp of solution. All using the measuring spoons from the kitchen, of course, not just tableware.

I was happy to watch the video for another reason. The packaging and the pill itself look exactly like mine, so I was reassured that my naltrexone, ordered online from India, was the real deal. Like she said, that packet contains almost a year's supply.

I'm still doing well on it. Sleeping more and better and more normally; feels like some internal healing is going on, but who knows? I attribute my improved cognitive function to LDN...I'm back to writing a novel I've had rattling around in my head for years and I've been able to do my goal of a minimum of one hour of writing a day, for the last several weeks. Some days I write for up to 4 hours. I haven't been able to do this for over 25 years, so I'm grateful for even this amount of improvement. Usually when I can't continue it is usually due to bad environment, such as noisy neighbors, smoke from neighbors' fires, nasty odors from neighbor's business...carpentry...coming over the wall into the patio where I sit to write, not to my own lack of stamina. Even my reactions to those noxious elements in the environment have improved, so I'm hopeful that along with the coming cooler weather, LDN will see me through to finishing my novel and getting it published. My fantasy is that it then earns me the money to go to Costa Rica and get stem cell treatment, recover and live happily ever after. Seems more doable than winning the lottery...

Best to all who are doing or trying LDN

 

[herbqueen]

So sad to see dr. B's passing- his intelligence and pushing the barriers with LDN has helped so man y people regain their lives-- God bless you Dr. Bihari- Amen.

 

[Frank]

Bless Dr. Bihari ..

Prof. De Meirleir told me he was not to big on LDN. It was not adressing the cause he told me and gives only symptomatic relief. But i'm wondering if he will adress the cause with me. If it's good symptomatic relief, which i'm starting to feel, then it's good enough for me.

 

[paddygirl]

To be getting on with.

Bless Dr. Bihari ..

Prof. De Meirleir told me he was not to big on LDN. It was not adressing the cause he told me and gives only symptomatic relief. But i'm wondering if he will adress the cause with me. If it's good symptomatic relief, which i'm starting to feel, then it's good enough for me.

I agree with you on that...symptomatic relief sounds fine for the moment until all the smoke clears.

I travel to India a bit, does anyone know if it can be bought over the counter or just online, and what the online site is. I have a feeling our customs will seize it though.

My doctor won't give it to me, she would prefer to have me half stoned on antidepressants that I don't want or need, actually they make me depressed and anxious. If anyone in Ireland has a doctor willing to prescribe it, Quinns Pharmacy in Gort compounds it, and will post it out with a prescription x

 

[Rita]

I think one of the on line sites to buy Naltrexone is unitedpharmacies.com They are cheap, but depends on the rules of the costums of your country if you can get it without problems.The name there is Nodict, generic Revia, from India.Dont kown about the safety of the products from India.

 

[Rita]

Bless Dr. Bihari ..

Prof. De Meirleir told me he was not to big on LDN. It was not adressing the cause he told me and gives only symptomatic relief. But i'm wondering if he will adress the cause with me. If it's good symptomatic relief, which i'm starting to feel, then it's good enough for me.

Frank ,if you are from Belgium and you are patient of Dr.De Meirleir, Do yo know if he is having succes treating patients with his treatments ?Do you know if some of the patients improve in some weeks or months? Is well worth to see him?

 

[oerganix]

I think one of the on line sites to buy Naltrexone is unitedpharmacies.com They are cheap, but depends on the rules of the costums of your country if you can get it without problems.The name there is Nodict, generic Revia, from India.Dont kown about the safety of the products from India.

I get mine online from internationaldrugmart.com (India) You have to have a prescription.

Paddygirl, I think you could probably find a doc in India who would prescribe for you and you could buy it there. Don't know, but the guys at internationaldrugmart have a toll free number, and seem helpful, so maybe you could call and ask them.

As far as I know, any country will let you bring in a 'reasonable' amount of prescription drug for personal use. It wouldn't have to be declared to customs if you were traveling, I think. Just have it in the container with the prescription, to show it is bona fide. This is not a 'controlled substance' ie, narcotic, so I can't imagine any country would care.

As for LDN not 'treating the cause', if it helps our immune systems work properly, it can't hurt so why not help ourselves while waiting for something that will treat the 'cause'? NSAIDS don't treat the cause either, but some docs recommend them for treating the inflammation...etc.

 

[dsdmom]

I noticed that someone at the recent Glasgow LDN conference mentioned that LDN might work by working on the microglia as well as opiod receptors.
It was just a throw-away comment, but it reminded me of something that Dr Nancy Klimas reportedly said .. which is that a study is coming out that suggests LDN has another mechanism of action other than the one we know about.
Sorry to be so vague. Don't have the energy to dig deeper, but maybe the more informed and/or functional might know something about this?

I talked to Nancy about this again this week on a follow up call with her. She said the slides from the presentation should be online but I haven't been able to find them. But it seems to be the research that is listed here: http://www.huffingtonpost.com/dr-douglas-fields/new-suspect-in-gulf-war-s_b_483875.html

I plan on starting this in the next few weeks but am realizing that I really need to address my gut issues & candida. So not sure if I should start it all at the same time or not.

 

[Frank]

Frank ,if you are from Belgium and you are patient of Dr.De Meirleir, Do yo know if he is having succes treating patients with his treatments ?Do you know if some of the patients improve in some weeks or months? Is well worth to see him?

Rita, i don't know what his succes rate his. He has very little time for patients. I think he's comparable to the other CFS specialist around the world.

 

[Seeker]

oerganix - I'm right there w/you; I started out getting compounded LDN, but began having dosing issues, so decided to prepare it myself using Revia tablets; worked out well for me that way, tho I did eventually have to stop after 16 mos (uncommon memory issues that ceased once I stopped LDN); but probably should keep in mind that although I've had viral reactivations of EBV & CMV plus 5 tick infections treated, my main symptom was fibro, not CFS (despite having a couple CFS symptoms).

 

[jace]

I've been on LDN for a month now. Last week was the first crash since taking LDN, I went to support someone at a benefit tribunal, and am only just getting over that. A week of low level function, hey ho. I'm up to 3mg at present.

I'm using liquid Antaxone from GoldPharma. You can get a Px from them online. It comes in 50mg bottles (cute!) and they include a measuring cup, which makes the whole compounding thing simple. The cost was $76 all in, about 3 month's supply if I make a new batch every week with 50mg.

Pharmacies sell dosing syringes for pennies, used mostly to give infants paediatric medication suspensions.

Most of the time it feels like I'm winning with LDN, but last week was not so good. Seems a bit better now. My blood pressure is more stable, weight is steady/slightly reducing, activity had increased, getting on with a few projects, I don't get that 'unplugged' feeling so much. So far (apart from last week) so good.

 

[leaves]

I'm on ldn for 2 months now; at first it did do something, but no major differences Now unfortunately.

 

[Diva55]

.
I'm using liquid Antaxone from GoldPharma. The cost was $76 all in, about 3 month's supply if I make a new batch every week with 50mg. .

Most of the time it feels like I'm winning with LDN, but last week was not so good. Seems a bit better now. My blood pressure is more stable, weight is steady/slightly reducing, activity had increased, getting on with a few projects, I don't get that 'unplugged' feeling so much. So far (apart from last week) so good.

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

That's quite expensive each month but I guess if you can't get it from a GP / Specialist then you don't have many options!

Hope you get more benefits.

 

[Diva55]

I'm on ldn for 2 months now; at first it did do something, but no major differences Now unfortunately.

Sorry it's no longer helping you Leaves - maybe a dose adjustment is needed? What dose are you on? I've been reading that people reduce doses and get then regain benefits when LDN seemed to stop working.

 

[Diva55]

Just an update from me.

I've been on LDN for 2 months restarting at 0.1ml and then slowly working up to 1.5ml.

I developed a nasty virus & an awful itchy rash on my hands, knee, neck & leg. I still have these although the virus is somewhat reduced but has left me weakened.

GP initially said it was a coincidence that I had started LDN a bit before. However on a recent visit he said although he doesn't understand LDN it could be that LDN triggered the virus & rash.

As we know LDN can trigger viruses & even reactivate old pains so I think LDN did trigger mine.

Recently I started to feel very bad with a huge FM flare that caused extremely bad pains especially in my face & neck though at the same time very strangely I seemed to have some more energy & was able to do some chores with better recovery time - all very odd!

But the pains were so bad & the rash got worse that I decided to stop LDN to see if all of this settled.

I have been off LDN for a week and will most probably leave it for another week and see how I am.

I do intend to get back to LDN as I did see benefits - quicker & better quality sleep, better recovery time from chores & surprisingly I lost 12 pounds in weight!

LDN is a difficult thing to figure out & my heart goes out to people who have had a hard time with it but am cheered by others that have seen great benefits.

 

[leaves]

I'm on 4.5 mg now.
When I started I got flu like symptoms. When I upped my dose I got menginitis symptoms ( very painful neck, nausea etc).
Immune reconstitution I guess.
Now I don't have side effects anymore, I'll just continue, maybe it takes some time to work.

 

[Diva55]

Leaves - Oh yes, that neck pain - my goodness I suffered with you on that one, horrible!

Just thinking out loud from things I've read on other boards. Some say 3mg is the optimum dose for them after trying 4.5mg. I also read that it can take up to 9 months to get the full benefits as your system adjusts.

So maybe 3mg might work for you better?

It's really all trial & error with all of use being different. Good luck.

 

[leaves]

Hey Diva,
thanks for al your kind words
I'll give it time. I just started taking 2 caps jarrow b right and that helps me.

 

[Jenny]

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