Low Natural Killer Cells - is there a protocol?
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NK17
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I'm sorry to hear about your very low NK cells' function.
You're asking the billion $ question
Some ME clinicians prescribe LDN and some Immunovir, some the 2 of them together. Based on your specific case, you might be a candidate for anti-viral therapy, which sometimes can help re-boot the immune system, but should be done under the care of an ME literate clinician.
It's pretty much "experimental" ground, in the sense that there isn't any approved protocol to boost NK cells' function.
My ME dr. has stated that if he had a drug/supplement to address and correct PWME's NKcells' dysfunction, he would give it as candy, unfortunately there is none.
I'll add that until serious biomedical research is done, such as the one carried out @ Griffith University in Australia by Dr. Marshall-Gradinisk, Donald Staines and Ekua Brenu, we won't be able to find the cause/s of such profound dysfunction and therefore continue to be in the dark and at best try treatments which seem to have a low rate of success.
I wish you the best in finding some form of treatment that can address and correct the NK cell dysfunction.
You're asking the billion $ question
Some ME clinicians prescribe LDN and some Immunovir, some the 2 of them together. Based on your specific case, you might be a candidate for anti-viral therapy, which sometimes can help re-boot the immune system, but should be done under the care of an ME literate clinician.
It's pretty much "experimental" ground, in the sense that there isn't any approved protocol to boost NK cells' function.
My ME dr. has stated that if he had a drug/supplement to address and correct PWME's NKcells' dysfunction, he would give it as candy, unfortunately there is none.
I'll add that until serious biomedical research is done, such as the one carried out @ Griffith University in Australia by Dr. Marshall-Gradinisk, Donald Staines and Ekua Brenu, we won't be able to find the cause/s of such profound dysfunction and therefore continue to be in the dark and at best try treatments which seem to have a low rate of success.
I wish you the best in finding some form of treatment that can address and correct the NK cell dysfunction.
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minkeygirl
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Mine dropped from 240 to 2 LU30 in 8 months and that was after a/v's and immune modulators. We are going to retest to see if that is an error. You may want to consider that.
Besides antivirals which I'm on so my NP wants me to try AHCC.
There are some threads here where @heapsreal talks about it, his experience, dose, cost.
Besides antivirals which I'm on so my NP wants me to try AHCC.
There are some threads here where @heapsreal talks about it, his experience, dose, cost.
Jonathan Edwards
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Can I ask how the sample was taken, how long it took to get to the lab and what lab did the test? If a lab has a range from 7 to 250 it is hard to see what that can mean. If it is quite OK for some people to have thirty five times as much function as others and the others still be normal it is hard to know what real life function they can be measuring.
NK17
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Those are all good and legitimate questions @Jonathan Edwards and that is why I think we need larger and deeper studies on patients with true ME, otherwise we'll keep on being left with doubts and probably miss an important piece of the puzzle.
I know that Dr. Daniel Peterson, Dr. Andreas Kogelnik and Dr. Nancy Klimas test for NK cell function and consider the test one of the pillars for an ME diagnosis.
What's your take on finding a solution? Any practical suggestions for patients and clinicians alike at this point? What is Dr. Bansal doing, does he check for NK cell function in his clinic for a work up?
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Jonathan Edwards
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I remain puzzled as to what is going on. Dr Bansal has said that he could not confirm an NK abnormality. Looking at the literature the first report of low NK values in ME was about 30 years ago. Normally, a scientific finding that can be replicated in other laboratories is sorted out after 30 years. So I am not very optimistic that this is going to turn out to be something we can rely on. I would like to know more about what other groups have found, however.
ME/CFS doesn't do "normally", certainly not as the word historically has related to scientific sortees and efforts at replication.
It will not have been replicated with any consistency over the last 30 years if only because the samples will have been muddied by including individuals without ME/CFS - same as most tests suggested during that time frame, and undone by outrageous definitional missteps.
Approach the process with a refined definition of ME/CFS. Get a validated - as much as one can be - ME/CFS sample that's large. Then look at the NK values, and compare to a large sample of healthy individuals.
I wouldn't be so pessimistic about the role of NK values, so long as someone is willing to look, and look in the right places.
It will not have been replicated with any consistency over the last 30 years if only because the samples will have been muddied by including individuals without ME/CFS - same as most tests suggested during that time frame, and undone by outrageous definitional missteps.
Approach the process with a refined definition of ME/CFS. Get a validated - as much as one can be - ME/CFS sample that's large. Then look at the NK values, and compare to a large sample of healthy individuals.
I wouldn't be so pessimistic about the role of NK values, so long as someone is willing to look, and look in the right places.
halcyon
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As others have mentioned, immune modulators might be able to improve things. If you search around the forums you'll probably be able to find which ones have worked for others.
As Dr. Edwards alluded to, a falsely low result could occur if the assay wasn't performed very quickly after the sample was collected.
Sleep is also very important for NK cell function. Even a single night of interrupted sleep can negatively impact NK cell function.
As Dr. Edwards alluded to, a falsely low result could occur if the assay wasn't performed very quickly after the sample was collected.
Sleep is also very important for NK cell function. Even a single night of interrupted sleep can negatively impact NK cell function.
Nielk
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Dr. Derek Enlander in NY tests for NK cell function as well. A large mainstream lab here - Quest Diagnostics tests for it. It is collected and tested right away like any other blood test.
halcyon
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According to Quest's website, the actual test is performed by the Nichols Institute in California and has to follow their "short stability protocol."
Gingergrrl
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I first had my NK cell functioning tested in July 2014 at OMI using Quest Labs and my number was five.
I have been taking Famvir for five mos as well as Monolaurin, Epicor and Maitake mushrooms (now switched to AHCC mushrooms.)
I just retested my NK functioning last week but do not have the results yet. My Dr said NK cells are very slow to improve so not to be surprised if the result hasn't changed.
I am curious to see it but truly I just want to feel better and function better again regardless of what any tests show!
I have been taking Famvir for five mos as well as Monolaurin, Epicor and Maitake mushrooms (now switched to AHCC mushrooms.)
I just retested my NK functioning last week but do not have the results yet. My Dr said NK cells are very slow to improve so not to be surprised if the result hasn't changed.
I am curious to see it but truly I just want to feel better and function better again regardless of what any tests show!
Nielk
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My NK fuction was 3 with Quest lab about two years ago. I have not tested again.
heapsreal
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What are Natural Killer (NK) Cells? Part of the first line of immune defense, NK cell provide surveillance for the immune system. Natural Killer (NK) cells are specialized immune cells of the innate, non-specific immune system. Comprising about 10% of white blood cells they are densest in the liver, spleen, blood, lung, bone marrow, and lymph nodes. In response to an immune threat, NK cells release a class of chemical messengers (cytokines, IFN-y) that recruit T lymphocytes and other immune cells to attack. They also function to communicate to other immune cells to curtail their offenses, thus inhibiting an overactive response. Why Are They Important? NK cells provide surveillance for the immune system. They circulate looking for viruses and cancer cells, in particular. Once in range, they release chemical grenades—perforins and granzymes—which poke holes in the enemy cells resulting in cell death, or apoptosis. It is now believed that NK cells have the potential to “remember” previous immune insults, leading to better coordinated immune cell responses with repeat exposure.
What Does ME/CFS Research Say About NK Cells? Natural Killer cell deficiency is a consistent finding in ME/CFS patients. In fact, some argue that NK cell measurement may be diagnostic (1). There are two types of NK cell deficiency: classical and functional. A classical NK cell deficiency is defined as an absence of NK cells in peripheral blood. This is thought to be a rare genetic condition involving three key genes (MCM4, FCGR3A, & GATA2). Several studies have found reduced NK cell functioning in ME/CFS While no concrete study has examined this specifically in ME/CFS, a 2010 study from Nancy Klimas’ group detected a functional deficiency in CFS patients when compared to controls. In their study, NK cell numbers were not significantly different between groups, but markers of activation were far lower in the CFS group (1). Not mentioned in this study, but worth noting, is that many ME/CFS patients also have perforin deficiency—the grenade-like ammunition of NK cells.
This finding, which has been duplicated by others, suggests that NK cell function is most affected in ME/CFS. Does Poor Natural Killer Cell Functioning Really Matter? Few would argue that NK cell counts in the high normal range are beneficial for long term health. Studies have found that those with genetic polymorphisms (classical type) that result in deficient NK cells have increased incidence of some cancers and greater susceptibility to Herpes family viral infections (EBV, CMV, HPV, HSV). Furthermore, some preliminary cancer therapies exploit NK cells to decrease tumor size and improve survival (2). But what effect might this bring for ME/CFS? In Klimas’ 2010 study, the researchers stated that NK cell activity was a strong indicator of illness severity—those with the lowest scores had more severe symptoms (1).
Also, the recent trials using Rituximab for ME/CFS highlight the importance of NK cell activity for recovery and symptom relief. These drugs are thought to work at least in part due to their ability to enhance NK cell activity. Clinical trails are still underway using Rituximab for ME/CFS, so it is too soon to tell the exact effects. The side effects and potential dangers of this type of therapy should not be overlooked, however.
Read more: A Closer Look at Natural Killer Cells In Chronic Fatigue Syndrome and Three Natural Ways to Boost Them http://www.cortjohnson.org/blog/201...ic-fatigue-syndrome-three-natural-ways-boost/
http://www.cortjohnson.org/blog/201...ic-fatigue-syndrome-three-natural-ways-boost/
What Does ME/CFS Research Say About NK Cells? Natural Killer cell deficiency is a consistent finding in ME/CFS patients. In fact, some argue that NK cell measurement may be diagnostic (1). There are two types of NK cell deficiency: classical and functional. A classical NK cell deficiency is defined as an absence of NK cells in peripheral blood. This is thought to be a rare genetic condition involving three key genes (MCM4, FCGR3A, & GATA2). Several studies have found reduced NK cell functioning in ME/CFS While no concrete study has examined this specifically in ME/CFS, a 2010 study from Nancy Klimas’ group detected a functional deficiency in CFS patients when compared to controls. In their study, NK cell numbers were not significantly different between groups, but markers of activation were far lower in the CFS group (1). Not mentioned in this study, but worth noting, is that many ME/CFS patients also have perforin deficiency—the grenade-like ammunition of NK cells.
This finding, which has been duplicated by others, suggests that NK cell function is most affected in ME/CFS. Does Poor Natural Killer Cell Functioning Really Matter? Few would argue that NK cell counts in the high normal range are beneficial for long term health. Studies have found that those with genetic polymorphisms (classical type) that result in deficient NK cells have increased incidence of some cancers and greater susceptibility to Herpes family viral infections (EBV, CMV, HPV, HSV). Furthermore, some preliminary cancer therapies exploit NK cells to decrease tumor size and improve survival (2). But what effect might this bring for ME/CFS? In Klimas’ 2010 study, the researchers stated that NK cell activity was a strong indicator of illness severity—those with the lowest scores had more severe symptoms (1).
Also, the recent trials using Rituximab for ME/CFS highlight the importance of NK cell activity for recovery and symptom relief. These drugs are thought to work at least in part due to their ability to enhance NK cell activity. Clinical trails are still underway using Rituximab for ME/CFS, so it is too soon to tell the exact effects. The side effects and potential dangers of this type of therapy should not be overlooked, however.
Read more: A Closer Look at Natural Killer Cells In Chronic Fatigue Syndrome and Three Natural Ways to Boost Them http://www.cortjohnson.org/blog/201...ic-fatigue-syndrome-three-natural-ways-boost/
http://www.cortjohnson.org/blog/201...ic-fatigue-syndrome-three-natural-ways-boost/
SDSue
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AHCC?
heapsreal
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extract from mushrooms.
I am not sure whether the commercial tests have a great deal of value. I read an old paper suggesting that the use of LU and of whole blood, produced unreliable results (I am not sure the commercial tests use whole blood, but they do use the LU).
However I believe the groups from Nova Southeastern U and Griffith U are using PBMC's, which are known to be more accurate, and I understand they have developed an alternate method to the LU. They have been able to reproduce their own and each other's work.
This finding of low NK cells in our population has also been made previously, as has been noted above by a few people. It is one of the best replicated findings there is in the literature, and really one of the few things I feel very confident about the number of studies showing such a finding, and number of different groups who were able to demonstrate something like this.
However I believe the groups from Nova Southeastern U and Griffith U are using PBMC's, which are known to be more accurate, and I understand they have developed an alternate method to the LU. They have been able to reproduce their own and each other's work.
This finding of low NK cells in our population has also been made previously, as has been noted above by a few people. It is one of the best replicated findings there is in the literature, and really one of the few things I feel very confident about the number of studies showing such a finding, and number of different groups who were able to demonstrate something like this.
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Gingergrrl
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@heapsreal I read the links from Cort (thanks for posting them!) and they mention three things to boost NK functioning. One is colostrum (which I have never taken but was recommended by my former ND.) The second is Melatonin which surprised me and I take every night to help with sleep. The third is mushrooms which I took Maitake for most of 2014 and then switched to AHCC.
Also, in Cort's blog he links to a chiropractor named Courtney Craig who does consults and reports to have had ME/CFS herself. She is in New York so not realistic for me but I was wondering if anyone has ever seen or familiar with her?
Thanks again!
SDSue
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@Gingergrrl Of note is that one must use 10-20 mg Melatonin in order to have an effect on the immune system. I take 2.5 as more leaves me groggy into the next day.
I am, however, intrigued by the AHCC. What brand and dose are you taking? This article shows a significantly greater response with Maitake and Shiitake combo than AHCC alone. Is there a reason doctors recommend AHCC over that combo? Seems might be good to pulse with all 3 different extracts?
As for Colostrum, is anyone using it with success? There must be a good reason that Klimas et al only use Inosine, but I prefer to throw more at this thing if there's a chance it will help.
I am, however, intrigued by the AHCC. What brand and dose are you taking? This article shows a significantly greater response with Maitake and Shiitake combo than AHCC alone. Is there a reason doctors recommend AHCC over that combo? Seems might be good to pulse with all 3 different extracts?
As for Colostrum, is anyone using it with success? There must be a good reason that Klimas et al only use Inosine, but I prefer to throw more at this thing if there's a chance it will help.
Gingergrrl
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@SDSue
I didn't catch that when I read it and I take 3 mg each night so I guess we are not getting the immune system affects.
I am taking the NOW brand of AHCC but they are expensive and the bottle says to take six per day. I can't afford this (plus it would be impossible b/c you have to take them two hours from food.) So I have only been taking two per day which probably isn't doing anything. I am thinking of going back to the Maitake mushrooms which were much cheaper. Also, a friend told me about Reishi and Cordyceps mushrooms (I may not be spelling those right) and I want to research those too. Different studies seem to report different things as to which are best so who really knows?
I don't know too much about colostrum but my former ND had recommended all kinds of stuff for me at one point including colostrum, Transfer Factor, Lomatium, etc. It was overwhelming at the time and I was scared to try so many things at once. We settled on monolaurin & Maitake mushrooms instead which worked out well. But now I am open to trying more things like you.
I didn't catch that when I read it and I take 3 mg each night so I guess we are not getting the immune system affects.
I am taking the NOW brand of AHCC but they are expensive and the bottle says to take six per day. I can't afford this (plus it would be impossible b/c you have to take them two hours from food.) So I have only been taking two per day which probably isn't doing anything. I am thinking of going back to the Maitake mushrooms which were much cheaper. Also, a friend told me about Reishi and Cordyceps mushrooms (I may not be spelling those right) and I want to research those too. Different studies seem to report different things as to which are best so who really knows?
I don't know too much about colostrum but my former ND had recommended all kinds of stuff for me at one point including colostrum, Transfer Factor, Lomatium, etc. It was overwhelming at the time and I was scared to try so many things at once. We settled on monolaurin & Maitake mushrooms instead which worked out well. But now I am open to trying more things like you.
