Low dose Naltrexone

[ellenelle]

this so helps me to know this, even while i am sorry you had problems as well at very low dose. i really hadn't expected to have any issues at all. especially after hearing how side effects were supposedly nonexistent. so when i started coma death napping & then went into PEM/crash i was looking around for other explanations, but really couldn't find any. then when i woke up the way i did ...& now having spent the day in such a horrific state, finally starting to lift, i have to think it is somehow related to the drug. unless one of my viruses climbed & went hugely more active.

If you're not stable on a consistent low dose, I'd recommend stopping altogether until you stabilize and then restarting at .1 mg for at least a week. As sensitive as you are, you need to go very slowly.

Some of us don't do well with LDN. I worked up to 1 mg and seemed to benefit for a few months, but after a while I noticed I was becoming depressed. It took stopping for a few weeks to regain my equilibrium. Then I started again with .1 mg, but I never could tolerate it again. Not great news, but you need to be aware of the possibility.

 

[nelle]

If you're not stable on a consistent low dose, I'd recommend stopping altogether until you stabilize and then restarting at .1 mg for at least a week. As sensitive as you are, you need to go very slowly.

Some of us don't do well with LDN. I worked up to 1 mg and seemed to benefit for a few months, but after a while I noticed I was becoming depressed. It took stopping for a few weeks to regain my equilibrium. Then I started again with .1 mg, but I never could tolerate it again. Not great news, but you need to be aware of the possibility.

really appreciate your response & sharing your experience. so sorry you couldn't tolerate again. i wonder if that may be the same for me. & not just because my real name is ellen & my name here is nelle...

it helps to hear that even micro doses may not be tolerated by some. sometimes i think i am going crazy when i have such an off the wall response to a supposedly benign med at micro dose. i have no idea what my doc will think of this - she seemed really wanting me to get on board with LDN to try to knock down the areas of inflammation left in the wake of my valcyte experience.

how did you dose at .1? if i dissolved 1 mg into a pint does that give me the correct equivalent? i can't find my med syringe but i think that the pharmacist said 1/4 tsp then would be .1mg.

not happy with how badly my ears are inflamed today. but yesterday was scary.

have you found other approaches that have been helpful to you? i could try to sell my doc on micro dosing valcyte. this, if indeed it was the LDN that crashed me, felt in some ways like what 900 mg of vaclyte did to me. but i had no mood issues with valcyte. i also had no clearing of head symptoms - it worsened them. whereas i did see improvement in key areas with the LDN.

 

[ellenelle]

i have no idea what my doc will think of this - she seemed really wanting me to get on board with LDN

My advice: never let any doctor push you into anything.

how did you dose at .1?

The compounded pill has to have a filler that dissolves easily in water for this to work.

I measured 50 mL and marked it on a plastic amber medicine bottle from a pharmacy (ask pharmacist if you don't have), very carefully put in the 1 mg pill's contents, mix carefully with 50mL of distilled water. Then a dose of .1 mg is 5 mL, which can be measured easily with a medicine dropper for children that you can get at any drugstore. ALWAYS shake well before using.

have you found other approaches that have been helpful to you?

Moducare, Taurox 7x (now available as Taurimmune here: http://www.earthturns.com/Taurox-TaurImmune-Essential-Liquid-p/taurox-taurimmune-essential-o.htm) helped me quite a bit, but grdually became ineffective. That was many years ago, before I knew about pulsing dosing to avoid acclimatization.

i could try to sell my doc on micro dosing valcyte.

That's unlikely to be helpful, because the mode of action is completely different. Perhaps you could try lysine as an antiviral (do a search); it's much easier to tolerate.

 

[nelle]

My advice: never let any doctor push you into anything.



The compounded pill has to have a filler that dissolves easily in water for this to work.

I measured 50 mL and marked it on a plastic amber medicine bottle from a pharmacy (ask pharmacist if you don't have), very carefully put in the 1 mg pill's contents, mix carefully with 50mL of distilled water. Then a dose of .1 mg is 5 mL, which can be measured easily with a medicine dropper for children that you can get at any drugstore. ALWAYS shake well before using.



Moducare, Taurox 7x (now available as Taurimmune here: http://www.earthturns.com/Taurox-TaurImmune-Essential-Liquid-p/taurox-taurimmune-essential-o.htm) helped me quite a bit, but grdually became ineffective. That was many years ago, before I knew about pulsing dosing to avoid acclimatization.



That's unlikely to be helpful, because the mode of action is completely different. Perhaps you could try lysine as an antiviral (do a search); it's much easier to tolerate.

thanks so much for all of the helpful info. i have gotten about 20 different variations as to how to dilute to ultra low dose - so am completely confused since i could not do math even before brain melted.

my doc is pretty non pushy... i think it just makes sense to trial again at super low levels since options are limited.

i remain on valtrex for now. not sure of my herpes viral loads right now.. waiting on finally getting home health in & getting new blood work as part of it - been on valtrex per lerner's protocol since last year. the new doc has left me on for now while working out strategy.

hope you are doing well. maybe some day i can catch up... xoxo

 

[ahmo]

It's LDN awareness week & release of new documentary.

This video was crowd funded on Start Some Good. It attempts to tell the story of LDN and questions why LDN (Low Dose Naltrexone) is not prescribed more widely.

We hear from several doctors and are witness to two remarkable success stories from the UK and the USA. In particular the video explores the story behind 7 year old Jacob Velazquez in Miami. Jacob is an incredible 8 year old who uses LDN to assist with his autism. He is now a prodigious pianist who has been able to launch his own music career.

The film was produced for the LDN Research Trust, a UK based charity. It is hoped with wider knowledge of LDN that a move towards clinical trials of this drug will accelerate.

This video should be viewed by patients, doctors and health practitioners alike to broaden their knowledge in the uses of Low Dose Naltrexone.

For more information on LDN please visit ldnresearchtrust.org

The film was produced by Noovo Creative Ltd noovo-creative.co.uk

Today is the start of LDN Awareness Week so please share
the video so we can gain as much exposure as
possible.

 

[Scarecrow]

I'm sure this might be posted elsewhere but just leaving info about how to get LDN if you are in the UK

http://www.prescribe4me.co.uk/LowDoseNaltrexone/Default.aspx

How do I get a prescription for LDN?
Click on the Consultation button.

Because LDN is an unlicensed drug and is not generally available in the community, an online-only consultation is not enough.
Once you click on the START consultation, there is a brief questionnaire to be filled in, and then one of our doctors specifically trained in LDN use will call you back.

This telephone consultation service costs £30 and includes the first 28 days prescription for LDN. You will only be charged if the doctor decides that you are suitable for LDN treatment. Repeat prescriptions are then issued every 3 months, at a cost of £14.50. LDN can take up to 6 months at maximum dose to reach full benefit.

Please note, we may request other information from you - such as a confirmation of diagnosis from your GP, or a letter of comfort from your own GP - allowing us to prescribe this medication for you. You will not be charged if we decide we cannot prescribe LDN for you in your circumstances.

I haven't yet used these guys so I can't endorse them. They link to a page of conditions that include CFS and several autoimmune conditions.

 

[ahmo]

alldaychemist.com, from India, has a place to record your prescription in the online order form. But it can be left blank, no rx needed. I switched from compounded LDN to 50mg naltrexone tabs from allday. Far cheaper. 50mg tablet + 50ml distilled water = 1mg/ml LDN.

 

[Avengers26]

I have been taking LDN at 2 mg twice a day. When I started on it, I upped it very slowly until I got to around 3.5 mg once/day. At that point, it gave me what felt like "low cortisol" symptoms (back ache, significant fatigue etc. etc.). I backed off to 2 mg once a day & then have gradually upped it to 2 mg twice a day. My reasoning for doing it was that, may be, it was the quantity of the individual dose that was causing these "low cortisol" symptoms. So, if I lower the individual dose & take it more often, it would work out better.

Well, I am still having moderate fatigue. While it's not as bad as earlier, it is still considerable. I have been on 2 mg plus dose of LDN for greater than 2 months. I read in several places to give LDN at least 6 months. Is this fatigue part of the "modulatory" effect of LDN while it's doing its initial business or does it mean I should go back down to a lower dose?
In other words, Should I "brave" through this fatigue & think it's LDN "doing" its initial work or like I said, I should instead go down to a lower dose.

 

[ahmo]

@Avengers26 Twice a day dosing doesn't sound like a useful idea to me. . Here's a quote from the Yahoo forum, don't know if it's directly applicable. Also, links to a good resource site and one of the several Yahoo LDN forums.

The rebound effect happens when the drug you have taken clears your system providing you with the benefits of its actions.

In other words the ‘good things’ happen once LDN has cleared your receptors and is no longer in your system but the benefits of its actions ie tricking your body into thinking it is not producing sufficient endorphins, enkephalins (specifically OGF) and receptors during the 4 hour blockade so that you start to produce more, allow this increase for OGF and the OGF receptor to interact (cell interaction) for 20 hours and this cell interaction is what slows down progression. So 20 hours of ‘good stuff’.

What we are finding out through research at Penn State is that some people don’t have a sufficient supply of their bodies own met enkephalin (OGF), and others not enough receptors. This creates an imbalance of the OGF-OGFr axis which drives the immune system. We need more studies to determine which diseases have too much OGF and what diseases have too many receptors. Perhaps then we could adopt a more specialised approach.

Research is also telling us that to achieve modulation of the OGF-OGFr axis by taking LDN, dosing between 1-4mg provides us with the best results.

Unfortunately there is no way of us patients knowing exactly how many hours the blockade period lasts for, but we know we have a window of 1-4mg to work from. Everyone responds differently so it is a case of trial and error. If you are experiencing constant fatigue for example then it’s quite likely a lower dose will be of more benefit.

Bear in mind that the blockade time is when you are speeding things up re making more OGF, endorphins and receptors. It’s after the blockade time you slow things down (cell proliferation) and progression of diseases.

Remember by taking LDN we are using the biotherapy approach to medicine which is all about artificially stimulating the bodies own chemistry to manage our diseases.

Jayne Crocker
http://www.ldnnow.com

I searched LDN dosing twice a day and came up with this response from a forum. makes sense to me:

Dr. Bihari: We began looking for ways to use this drug(naltrexone) to raise endorphins without blocking them. We hired a laboratory scientist to measure endorphin levels. We’d measure in
the afternoon, then we'd give the first dose at bedtime that night. Then we’d measure
again at the same time the next day; then again at one week, and again at one month.

We found that doses in the range of 1.75 to 4.5 milligrams (which is just a fraction of
the recommended dosage to addicts) would trigger or jumpstart endorphin production
during the night.

Except with exercise, endorphins are made only between two and four in the
morning. The brain sends a message out to the adrenal and pituitary glands and tells
them to make endorphins. Giving a dose three, four, five hours before that, at
bedtime, is enough to make that message from the brain much stronger.

Dr. Bihari: The level of endorphins went up by two hundred to three hundred
percent. We then started a little foundation and did a placebo-controlled trial in which
half the patients got the drug and half got sugar pills. A year later when we broke the
code, we discovered that people with HIV who took the drug had only an eight percent
death rate in the year, while people who were on the placebo had a thirty-three percent
death rate. And of course they had many more infections and their immune system
declined. That was a startling discovery.

=======

You do not want to block endorphins more than once in a 24 hour period. DL-phenylalanine can keep endorphins from dropping throughout the day. See the cautionary warnings about the supplement DL-P as some are unable to take this supplement.

https://sites.google.com/site/dudleyslowdosenaltrexonesites/home/side-effects-and-dosing-of-ldn

https://groups.yahoo.com/neo/groups/lowdosenaltrexone

 

[JPV]

Twice a day dosing doesn't sound like a useful idea to me. . Here's a quote from the Yahoo forum, don't know if it's directly applicable. Also, links to a good resource site and one of the several Yahoo LDN forums.

I thought that it was not really clear how LDN works for responders that have ME/CFS. If that's the case, the benefits may come from something other than the modulation of endorphins.

 

[EtherSpin]

I spoke to someone who said Jarred Younger has speculated that we might actually want the endorphin production suppressed (not for it to boost back up) or that the real benefits are from calmed microglia - the speculation seemed to be that Post exertional malaise might actually be screwed up microglia that make us feel terrible where another person exerting would get a mood boost from endorphins

 

[Avengers26]

@ahmo Thank you. That's very useful info. I will lower the dose to a more tolerable one.

 

[southern oscillation]

Thank you Ahmo for the link to the naltrexone movie at vimeo.
I'm trying to watch and listen, but have for a long time had difficulties here in getting decent downloads from vimeo, will have to try at some very off-peak time.

I would like to ask a broader question.

This follow my introductory message elsewhere.

I am trying to understand the reactions to starting LDN that people are reporting, a lot of it is just 'awful' etc. Meaning?

I suspect there are variations BOTH arising from the individual's existing immune and other systems especially rate of metabolism of this substance AND other medication and diet patterns people have.

I spent this past week getting off tramadol 100mg slow release twice daily which I had been taking at that level and sustained for about six weeks. No other opioids, some hell in the withdrawal. (My sensitivity to lots is indicated by discovery over ten years ago that ONE GLASS of a decent wine would pitch me into dreadful states for ten weeks after two euphoric days. Also problems with many household chemicals.)

To assist the withdrawal I took 25mg prednisone in the mornings for four days, now reduced to 15mg for two days, continuing rapid wean possible after very short high dose (this I know from a decade and a half as moderator of a brain tumour support group, kick doses can be very effective). Previous history of general remission of CFS/FMS/neurological etc symptoms on 25mg prednisone over some weeks, pain rising when weaned down to 15mg. So when I began the 4.5mg naltrexone I had gone through withdrawal hell, but a lot of general pain symptoms were in retreat.

Other medications/supplements:
- buscopan (hyoscine/scopalomine) 10mg/dayin courses from time to time, both for pharmacological purpose and Meniere's symptoms. Hyoscine has I believe been struck off the US drug list by the FDA because drug companies find it unprofitable. It is still sold elsewhere.
- minocycline for cognitive benefit, reduction of damage by proliferating microglia after either/or small strokes/post-concussion syndrome after farm accident. I NOW DROPPED MINOCYCLINE AS THIS FUNCTION IS ONE OF THE ROLES OF LDN.
- paracetamol (acetaminophen) max say 2700mg/day
- aspirin soluble as sports drink 300mg mornings
- cetirizine antihistamine, curiously seems to be necessary even when taking lots of prednisone
- Nexium added to avoid reflux problems + some oral nystatin to avoid fungal problems - from prednisone.
-Magnesium
-Vitamin D
- VPAP and mouth guard for apnea.

Friday night's LDN 4.5 produced a Saturday of early rising, mental clarity, healthy perception of life, ability to stand up straight though I have just been referred to rheumatologist with signs of rheumatoid arthritis. I was startled enough at reduction of joint pain and possible shrinkage of joint swellings to take several photos of joints for comparison.
...Noting that prednisone has also been helping but there was a different, assertive, strong sense to Saturday, more than with prednisone without LDN. These qualities both in the mind and in body including digestive and urinary tracts not firing off all the time. A few tingles of neuro-something? like tiny cold rain drops but sky was blue, a bit bossy in the kitchen where was energetic and which was a return to chefly form.... but said sorry next morning for forceful expression, and said smiling thank you for my partner's assertive responses (a very experienced social worker who has been watching Silk on Netflix). Saturday and Sunday big improvements in relaxed ability to plan and do things. A mix of my normal crappy sleep, plus some better sleep, plus alertness, mental and physical vigour, plus tiredness, healthy feeling tiredness rather than foggy fatigue.

I had done well Saturday, but mindful of people writing about reactions, I skipped Saturday night dose. Also because there is the prednisone factor. Sunday, second day at 15mg on prednisone wean and no overnight LDN, a bit rougher, but the best day in weeks apart from Saturday.

It is 9pm in eastern Australia, 18hrs ahead of Cupertino. I will halve the 4.5mg LDN capsule tonight.

So that's a bit long, but it's my context to beginning reporting my start to naltrexone.

Thanks for being there...

 

[ahmo]

I am trying to understand the reactions to starting LDN that people are reporting, a lot of it is just 'awful' etc. Meaning?

For me it was detox. Because of this thread, I was prepared. First I started w/ tiny doses. And had discomfort even at those doses, though not unmanageable. I was already fully engaged in detox, so symptoms from LDN would have been some version of familiar tinnitus, head fuzziness, irritability, etc. My reliance on coffee enemas over the last 2 years meant that I easily dealt with this. Slightly disrupted sleep a few times only. (Yay B12, which normalized my sleep.)

I spent this past week getting off tramadol 100mg slow release twice daily which I had been taking at that level and sustained for about six weeks. No other opioids, some hell in the withdrawal.

Friday night's LDN 4.5 produced a Saturday of early rising, mental clarity, healthy perception of life, ability to stand up straight t

I think you'd get a lot out of the yahoo forum.

 

[mirijam]

0.1mg LDN makes me really tired. could this be normal?

 

[ahmo]

@mirijam Here's a good site you can check.
https://sites.google.com/site/dudleyslowdosenaltrexonesites/home/side-effects-and-dosing-of-ldn

 

[mirijam]

Oh tiredness, I see. Will take it more longer and hope this getting better. and should take it in the evening I think.. thank u

 

[Deltrus]

Well guys, naltrexone seems to give me a stimulated feeling. I've heard that opioid levels are higher in people who have chronic pain. My shoulder and other random areas have been painful for quite a while. Most likely opioids are making me sleepy?

So anyways this stimulated feeling made it so I had trouble sleeping last night, which I never have an issue with. Normally I fall asleep and don't even think about it.

I hear that LDN works best at night because most endorphins are made at night. I will try to see if I can make it work.

I was surprised that I feel very few acute effects upon taking LDN. I thought opioids were used a lot in cognition but I guess not?

The antiinflammatory action of LDN seems to work well. I don't get muscle twitches and my nerve pain is lower right after I take LDN.

I haven't gotten any sign of results from opioid upregulation yet.

 

[ahmo]

@Deltrus Here's an excellent info site for LDN. It's fine to take LDN in the morning. You might start it AMs, then switch. I had some sleep issues initially, but it passed quickly. good luck.
https://sites.google.com/site/dudleyslowdosenaltrexonesites/

 

[Deltrus]

@Deltrus Here's an excellent info site for LDN. It's fine to take LDN in the morning. You might start it AMs, then switch. I had some sleep issues initially, but it passed quickly. good luck.
https://sites.google.com/site/dudleyslowdosenaltrexonesites/

Thanks. I will probably do that then. I'l take it in the morning for a few weeks then switch to night time and see if the insomnia goes away.