UK: Low-dose naltrexone as a treatment for chronic fatigue syndrome (2020)

[Pyrrhus]

Related discussions:

Low dose Naltrexone (2009)
https://forums.phoenixrising.me/threads/low-dose-naltrexone.292/

LDN - how's it working for you? (2010)
https://forums.phoenixrising.me/threads/ldn-hows-it-working-for-you.4179/

Naltrexone Restores Impaired Transient Receptor Potential Melastatin 3 Ion Channel Function in Natural Killer Cells From ME/CFS patients (2019)
https://forums.phoenixrising.me/thr...ural-killer-cells-from-me-cfs-patients.78394/

Practical Pain Management: Chronic Fatigue Syndrome: Naltrexone as an Alternative Treatment (2021)
https://forums.phoenixrising.me/thr...naltrexone-as-an-alternative-treatment.83406/

 

[Reading_Steiner]

Don't suppose this will have any sway over the NHS ? having some things like this as an option would likely be very good for a lot of people here that feel abandoned etc. After reading whitneys write up I am more reluctant than previously to take any of these drug interventions though for fear of making it worse, need more study bigger numbers to prove its safe.

 

[godlovesatrier]

Also I found a UK pharmacy that I assume compounds on site for LDN, I've listed all the details in a separate thread:

LDN Prescriptions UK For Private Patients

Not too sure on cost private ME patients pay £40 consultation and then I assume about £40 for the liquid LDN sublingual drops (which allows you to titrate from low doses like 0.25 or 0.5mg)

 

[godlovesatrier]

Cort was saying in a video that he agreed if patients are severe then probably best not to experiment until the research is solid @Reading_Steiner I have to agree.

 

[kangaSue]

Cort said in another article about LDN;
[ De Meirleir explained that LDN is an opiate receptor blocker and is used in very small doses (0.5-5.5 mg/day) relative to its normal dosing (5 grams, which is 5000 mg). It turns out that the partial blockage of the opioid receptors tricks the brain into producing more of its own opiates, thus reducing pain and improving sleep (but not generally reducing fatigue).
Those opiate receptors don’t just affect pain, however; the opiate receptors in the body and skin also help to control blood flow–a major issue in ME/CFS. Dr. De Meirleir didn’t say exactly what LDN did, but he implied it might be able to help smooth out the blood flow problems, perhaps by reducing the dilation of the large blood vessels and/or increasing the dilation of the small ones. ]
https://www.healthrising.org/blog/2...atment-chronic-fatigue-syndrome-fibromyalgia/

 

[nerd]

Those opiate receptors don’t just affect pain, however; the opiate receptors in the body and skin also help to control blood flow–a major issue in ME/CFS. Dr. De Meirleir didn’t say exactly what LDN did, but he implied it might be able to help smooth out the blood flow problems, perhaps by reducing the dilation of the large blood vessels and/or increasing the dilation of the small ones.

Very interesting. Maybe anyone taking LDN can confirm this by measuring their Perfusion Index (in case you have a blood oximeter)?

 

[godlovesatrier]

Blood flow does crop up a lot in various drugs (Goldstein) and even Nimodipine (Goldstein and Orr) so it would make sense that some subsets respond to increased blood flow, not just to the brain maybe but the whole body.

At any rate I am currently doing well on Thiamine but want to find a protocol of supplements/drugs that will treat the ME. Hopefully the LDN will compliment the Thiamine in a non stimulatory way. Although really I am looking and hoping for the immune modulation.

You both might find this video interesting, which goes over th1 and th2 and the benefits of LDN in terms of immune modulation:

https://ldnresearchtrust.org/debbie-hamilton-md-latest-th17-research-ldn-low-dose-naltrexone

Second to last line is the important one for LDN.

Corts article linked in the previous post also mentions this for LDN:

LDN was also recently found to reverse allodynia in rats and is able to cross the blood-brain barrier and suppress the activity of the immune cells (glial/microoglial) that promote inflammation in the brain.

 

[godlovesatrier]

Good overview of LDN here from the ME Association

https://meassociation.org.uk/wp-con...Low-Dose-Naltrexone-LDN-in-MECFS-02.11.19.pdf

Which on page 4 discusses the study which showed increased B and T cell activity.

The increased endorphin levels also modulate the immune response. It modulates T and B cell production and rebalances the levels of Thelper and T-regulator cells, which are immune cells responsible for stopping the immune system from attacking itself (Bihari 2013).

I am particularly interested in this because my immune system has been under active the whole time I've had ME and even though my lymphocyte blood count in sept was normal when I take immune modulators that increase t cell counts like Astragalus I tend to feel a lot better and it often clears up a lot of my symptoms.

 

[godlovesatrier]

A link to an interview with Dr Bihari who's used LDN a lot:

https://todayspractitioner.com/wp-c...ne-System-Function-athm_19_2_bihari_56_65.pdf

The most interesting part I can see:

Q: So naltrexone is an all-purpose immune booster?

A: Dr Bihari: Right. Naltrexone should be useful in treating any chronic infection—tuberculosis, for example; Lyme disease; certainly diseases like genital herpes, which I do have a patent for. It seems to be effective for people infected with genital herpes in preventing recurring attacks. So by boosting immune function, it appears to have benefit in a wide range of infections by increasing the immune system’s ability to control them. With hepatitis C, it’s hard to separate out what it does, because the hypericon acts as an antiviral.

@Hip you might find the above bit interesting.

 

[godlovesatrier]

This is also interesting and pointed at ME patients not FM patients:

Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Authors:
Olli Polo, Pia Pesonen & Essi Tuominen

Results

: Outcome data were available in 92.2% of patients with an average follow-up time of 1.7 years. A positive treatment response to LDN was reported by 73.9% of the patients. Most patients experienced improved vigilance/alertness and improved physical and cognitive performance. Some patients reported less pain and fever, while 18.3% of patients did not report any treatment response to LDN.

It's a shame that's all the data they gathered, but I guess it's better than nothing.

 

[lenora]

Another study here that links LDN to increased beta-endorphins, which directly modulates t cell action:

Beta-endorphin and the immune system--possible role in autoimmune diseases




This does make it sound a bit immunosuppressive though?

I began this very long trek with a pituitary tumor about 5 years before the real cause of my problems was found. Indeed, I did have one and it was controlled with a drug, bromocriptine, that I took for approx. 20+ yrs. Certainly made more sense than operating via the nose. Soon, that became the least of my problems, as I'm sure many of you have found out since.

You know, I've been living with and dealing with this illness and other patients for well over 35 yrs. now. To this day, I couldn't name any one cause of the problems....and feel it's a combo for different people. I don't envy the researchers working on this as there are so many avenues to go down. Certain things are common to all of us, but then there are those outstanding differences.

I can only hope that those who have recovered managed to stay that way.

Does anyone know what is happening with Lauren Hillebrand (the author)? She had been severely ill for many years, and the last I heard was that she was doing light exercise, which was a long, long way for her. She even wrote her books on a slant board, as she was bedbound for years. Yours, Lenora.

 

[lenora]

This is also interesting and pointed at ME patients not FM patients:

Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Authors:
Olli Polo, Pia Pesonen & Essi Tuominen



It's a shame that's all the data they gathered, but I guess it's better than nothing.

OK...I didn't read the entire paper. However, I would like to point out that I also had FM (still do to a certain extent) and live/lived with all of the symptoms of CFS/ME. I don't know why FM wasn't included, but I do know that in my case it has changed form. Gone are the knots that were everywhere, especially in the spinal area, down my arm, wrapping around my ribs...and well, why go on? At least the extreme lymph nodes have gone, although when the weather changes I feel the pain just about everywhere.

I don't know why FM wasn't included in the study, but I wonder if people who had surgery or accidents are more likely to have FM than patients who develop CFS from say, a viral cause. Where does that leave those of us who have all of the conditions, some also caused by viruses? And I can tell you that FM is an absolutely misery to live with. Good luck as you try to find answers.

 

[Wishful]

when I take immune modulators that increase t cell counts like Astragalus I tend to feel a lot better and it often clears up a lot of my symptoms.

Have you tried elderberry? I'm not sure what its mechanism is, but it certainly seems to boost my t-cell system, stopping viral infections and making my ME symptoms worse when I'm not fighting a virus. I've tried other immunomodulators, but elderberry seems the most potent for me.

 

[Wishful]

Don't suppose this will have any sway over the NHS ?

Do you expect rational decision-making from the NHS?

To me, if a drug is shown to benefit a significant number of patients, and harm only a very small number (maybe due to comorbid conditions), then patients should be given the data and make their own choice of whether to try it. Unfortunately, our society no longer expects people to have common sense and accept responsibility for their actions, so governments will probably insist on absolutely zero chance of harm (and liability).

 

[godlovesatrier]

@Wishful I did give elderberry a go actually, sadly it just seemed to make me feel sick. Suspect this is the elderberry because I've had a fruit allergy since I was about 14. Even fruit juice bloats me.

 

[godlovesatrier]

@lenora

I didn't explain very well but in Cort's first healthrising article he explains that the studies and patient groups who responded best to LDN were FM patients. They were the ones who experienced the best cessation of symptoms (primarily pain). So that's the only reason a purely ME study assuming it was just ME patients, was interesting as it isn't expected to work that well in ME patients.

Saying all that the studies show quite a lot of properties, not all related to pain response, which makes me wonder if it would be equally useful to ME. I'm sure we have loads of threads about LDN though on PR where people have tried it and it hasn't helped.

It will be an interesting one to trial, no idea what effect it will have yet.

 

[Wishful]

I did give elderberry a go actually, sadly it just seemed to make me feel sick.

Well, it made my ME symptoms worse too, which I ascribed to its immunostimulant effect. That made me try it again when I thought I had a virus, and those symptoms went away after a couple of elderberry tablets. That's not enough to prove that it worked that way, but it is supporting evidence.

Of course, if you have a type I allergy to elderberries, those negative effects might overpower any beneficial ones.

 

[nerd]

Well, it made my ME symptoms worse too, which I ascribed to its immunostimulant effect. That made me try it again when I thought I had a virus, and those symptoms went away after a couple of elderberry tablets. That's not enough to prove that it worked that way, but it is supporting evidence.

Not all immune boosters are beneficial for immune dysfunctional diseases such as CFS/ME. Some "boosters" simply boost cytokine synthesis or induction, which isn't solution-oriented with CFS/ME. It's the lymphocyte profile, and the differentiation of immature lymphocytes in the thymus, which have to be corrected.

 

[godlovesatrier]

@Wishful yep must thoughts also. I remember trying it for ages though. I'm sure it was over a month. Like you I thought it would be great for t cells.

To be honest I got more out of taking Andrographis. Or other traditional herbs combined together like lomatium, isatis, houtouynia, skullcap, redroot, milk thistle and dandelion. But I'm looking for a long term solution now. Currently high dose thiamine and hopefully ldn will do the trick. Plus it will work out cheaper than andrographis.

 

[Wishful]

Not all immune boosters are beneficial for immune dysfunctional diseases such as CFS/ME.

I tried several things that were supposed to have some effect on the immune system, just to see how they affected my ME. All it did was convince me that ME's effects on the immune system are not simple. It doesn't help that it varies from person to person.