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treatment for low NK cells -- Imunovir?

el_squared

Senior Member
Messages
127
Hello,
This is a two-pronged question about NK cells and treatment.

Can someone explain to me what the significance is of having low NK cell function? I was tested by the CFS clinic at Stanford and I was found to have little to no function.

Stanford didn't give me any explanation of what the implications are of my test result. However, last night Dr. Bonilla wrote me saying there is a drug that can be purchased in Canada, shown to increase NK cells, Imunovir.

But he didn't say whether this drug has a track record of improving the symptoms of ME/CFS patients. Does anyone know?

thanks,
Laura
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Can someone explain to me what the significance is of having low NK cell function?

Good question. Not knowing much about the subject I'm not going to opine. I can tell you, however, that I am heterozygous for a somewhat rare(ish) (~3% of the population) mutation in the perforin gene (PRF1 A91V / rs35947132). If you have done 23andMe, or equivalent, you should be able to inquiry about your status as well.

Additional info here:

Chronic fatigue syndrome is associated with diminished intracellular perforin

Summary
Chronic fatigue syndrome (CFS) is an illness characterized by unexplained and prolonged fatigue that is often accompanied by abnormalities of immune, endocrine and cognitive functions. Diminished natural killer cell cytotoxicity (NKCC) is a frequently reported finding. However, the molecular basis of this defect of in vitro cytotoxicy has not been described. Perforin is a protein found within intracellular granules of NK and cytotoxic T cells and is a key factor in the lytic processes mediated by these cells. Quantitative fluorescence flow cytometry was used to the intracellular perforin content in CFS subjects and healthy controls. A significant reduction in the NK cell associated perforin levels in samples from CFS patients, compared to healthy controls, was observed. There was also an indication of a reduced perforin level within the cytotoxic T cells of CFS subjects, providing the first evidence, to our knowledge, to suggest a T cell associated cytotoxic deficit in CFS. Because perforin is important in immune surveillance and homeostasis of the immune system, its deficiency may prove to be an important factor in the pathogenesis of CFS and its analysis may prove useful as a biomarker in the study of CFS.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
In a clinical trial, the potent NK cell activity booster supplement BioBran MGN-3 did not improve ME/CFS.

It sucks they didn't measure actuall NK cell activity in that trial (based on my reading of the full study, please correct me if I'm wrong.) In any case, this suggests a screw up in NK cells that just isn't correctable easily (perforin mutations, others?)
 

el_squared

Senior Member
Messages
127
Yes, I meant to say it was function that was low. What is MGN-3 -- is that related to Imunovir?
 

JES

Senior Member
Messages
1,318
You can just buy inosine if you don't have access to Imunovir. Inosine is similar in structure and is classified as a supplement rather than a drug, so you can buy it from anywhere. Other NK cell activity boosters that have had at least anecdotal evidence include LDN, andrographis, mushrooms (AHCC) and rice bran (gamma oryzanol).

If you take a bunch of the above supplements I think you have a pretty good chance of increasing NK cell activity. The bigger issue is how it will affect your CFS. I get intolerable side effects from almost every immune / NK cell booster. If your immune system is already partly in overdrive, then these supplements will do little good, except maybe for LDN that is more an immune modulator rather than booster.
 

Hip

Senior Member
Messages
17,801
It sucks they didn't measure actuall NK cell activity in that trial (based on my reading of the full study, please correct me if I'm wrong.) In any case, this suggests a screw up in NK cells that just isn't correctable easily (perforin mutations, others?)

I have not read the full paper, but I imagine they did not measure NK cell function as the test is expensive.

In the Prof Montoya video transcript in this post, he says of ME/CFS patients that:
at least 30% of them have significantly low natural killer cells

So one might guess that MGN-3 or other NK cell function boosters would likely work best for the 30% of patients with low NK cell activity. So perhaps if the MGN-3 study had selected only such patients, it would have gotten better results.


I posted a list of NK cell function boosters here.
 
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If you have a moment, could you ask your physician why they do not infuse NK cells directly? If they are confident that it is a problem. It is Stanford.
 

Seven7

Seven
Messages
3,444
Location
USA
Shaitake Mushrooms (white and maitake I think).
LDN
inosine
there is another one I cannot think of AHCC? Maybe.

Fish Oil will Lower it, so just as you find things to increase avoid the ones that lower them.
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
From the bleeding edge of medicine there’s ACT / AIET

Autologous immune enhancement therapy(AIET) is a treatment method in which immune cells are taken out from the patient's body which are cultured and processed to activate them until their resistance to cancer is strengthened and then the cells are put back in the body. The cells, antibodies, and organs of the immune system work to protect and defend the body against not only tumor cells but also bacteria or viruses.

....

Auto-Immune diseases like the Auto-Immune Hemolytic Anemia (AIHA) have been known to be associated with malignancies. In general lower Natural Killer (NK) profile has been associated with development of cancers by earlier studies.[18] Recently an article has been published in which it has been described that the in vitro expansion of NK cells is decreased in cancer patients who have concomitant Auto-immune Diseases like the AIHA.[19] This study also throws questions on whether AIHA is a complication of malignancies, due to the lower NK cell profile in cancer which would have given rise to the AIHA due to some common antibody between NK cells and Red Blood Cells (RBCs) or whether the AIHA lowers the NK cell profile which in turn causes the cancer. This warrants further investigations into the identification of common antibodies between NK cells & RBCs and also finding new Immuno- therapeutic strategies which can tackle both cancer and auto-immunity

https://en.m.wikipedia.org/wiki/Autologous_immune_enhancement_therapy
 

ebethc

Senior Member
Messages
1,901
I've been taking andrographis for this purpose lately... Too soon to measure success/failure, but I can say that andrographis has been great for the past month I've been taking it... It helps w joint pain (well documented to help arthritis) and concentration (supposedly lowers brain inflammation)

I second the caution re fish oil (epa/dha)... I cycle on/off it to avoid impacting nk cells; so far, that's worked, ie, I can still get the benefits w/o the downside.

https://www.selfhacked.com/blog/intro-natural-killer-cells-increase-decrease/
 

el_squared

Senior Member
Messages
127
Shaitake Mushrooms (white and maitake I think).
LDN
inosine
there is another one I cannot think of AHCC? Maybe.

Fish Oil will Lower it, so just as you find things to increase avoid the ones that lower them.
So if fish oil lowers it, does that mean fish oil is bad for you? Weird.
 

JES

Senior Member
Messages
1,318
https://www.ncbi.nlm.nih.gov/pubmed/11237929

Apparently it's the EPA component in fish oil that is responsible for lowering NK cell activity. The study participants consumed nine capsules a day, which is not what the typical dosage is, so it might be a bit misleading. 1-2 capsules per day should probably not result in much decrease, at least I haven't felt any worsening at that dosage.
 

Seven7

Seven
Messages
3,444
Location
USA
So if fish oil lowers it, does that mean fish oil is bad for you? Weird.
Fish oil is what they give women who can’t get pregnant becuase high NKs. I used to take (. By doctor request) a lot of fish oil and I never could raise NK) so I quit it and email the Cfs doctor asking her but she never Answered me, I also ask in thi la forum and nobody replied. I have been off and need to meassure NK cells again, so I will see if the numbers finally improved. Will let you know