Poll The Natural Killer Cell Dysfunction Poll

[Cort]

In honor of a recent finding that may someday impact natural killer cell functioning let's see who has a) had a NK cell functioning test done and what the results were.

 

[Linda B]

Hi Cort,
Thanks to you and your team for this brilliant web site. Congratulations.

 

[Cort]

Hi Cort,
Thanks to you and your team for this brilliant web site. Congratulations.

Gotta like that post (I clicked the like button)...
Thanks very much!

 

[Cort]

We've only had ten NK cell test results so far but everyone has been below normal.

 

[Sparrowhawk]

Great survey, would love to see more attention paid to this aspect of ME/CFS. I was interested to see the comments from your related article post, where some folks actually had much *higher* acting/overactive immune systems.
The odd thing for me is that I am in the category of "don't get sick" other than my usual symptoms, but my NK cell activity is ultra low. Does that mean I just don't show symptoms and all the pathogens are having their merry way with my body? Unknown.

 

[pat0814]

My first NK Cell Activity test was run in 1992 and came back at 12.2%. The range at the lab said it should have been 24%-53%. By 1997 my activity level had dropped to 4.4%. It gradually improved over the years and was at 18.94% in 2014 which is the highest it has ever been (although still low) and it took 22 years to get there!

 

[zenmom]

I am a patient at Dr Nancy Klimas's Neuroimmune Institute at Nova Southeastern University in Florida. They run a comprehensive immune function panel on me (blood samples) approximately twice a year. My immune profile has improved a lot since I first started going there about 3 years ago, although this last round indicated Epstein-Barr Virus reactivation and some very high inflammatory markers. But at least they are looking.

 

[Susan Clark]

Has anyone considered or have had autologous stem cell treatment for a cytokine "reboot"? If so, any advice?

 

[Lissa]

NK cell activity was "normal", and NK cell count was within range, but CD19 (B cells) were low; CD4 (Helper cells) and CD3 (T cells) were both high. Not sure what any of that means, other than it proves that something strange is going on!

 

[zenmom]

Has anyone considered or have had autologous stem cell treatment for a cytokine "reboot"? If so, any advice?

Dear Susan,
I had that procedure done in early December (about 4 1/2 months ago) by a doctor who is located in Miami. I decided to do it because one of the other patients at Dr Klimas' clinic had reported good results from it. I knew it was a shot in the dark, so to speak, since there was no extensive research on this procedure and its results. My reasoning was that since it was my own stem cells, I was unlikely to have a bad reaction, and there were no other potential treatments on the near horizon that might be helpful.
The procedure to "harvest" my stem cells from abdominal fat felt really weird, but was not particularly painful. Getting them re-infused after they were separated from the fat cells and treated to activate them was nothing more than having an IV drip for a little while.
I'm sorry to report, however, that I haven't felt any improvement since then. I'm over 60 and have had this illness for a long time. From what I've heard, the longer you've had it the less likely you are to recover.
Having the procedure done in the U.S. meant there was no "multiplying" of the harvested stem cells, as I have read they do with offshore stem cell clinics. I don't know if that makes a difference. I think stem cell therapy is promising, but still in the very early stages. It's still an experimental procedure, and definitely NOT covered by health insurance. If you can afford it, and are interested in trying it, read everything you can about it and then make your own decision. Just know it's not a sure bet.
Good luck!
Regards,
Marcia

 

[ankaa]

I am a patient at Dr Nancy Klimas's Neuroimmune Institute at Nova Southeastern University in Florida. They run a comprehensive immune function panel on me (blood samples) approximately twice a year. My immune profile has improved a lot since I first started going there about 3 years ago, although this last round indicated Epstein-Barr Virus reactivation and some very high inflammatory markers. But at least they are looking.

how does Klimas define "ebv re-activation"? which test defines it? there are several ebv tests... thanks

 

[ankaa]

I am a patient at Dr Nancy Klimas's Neuroimmune Institute at Nova Southeastern University in Florida. They run a comprehensive immune function panel on me (blood samples) approximately twice a year. My immune profile has improved a lot since I first started going there about 3 years ago, although this last round indicated Epstein-Barr Virus reactivation and some very high inflammatory markers. But at least they are looking.

what does Dr Klimas recommend to increase NK cell function? what does she recommend to decrease inflammatory markers? I super low NK cell function, and as far as I know, there's no solution... Also, I can find anything to bring down all the inflammation in my body...

 

[Strike me lucky]

what does Dr Klimas recommend to increase NK cell function? what does she recommend to decrease inflammatory markers? I super low NK cell function, and as far as I know, there's no solution... Also, I can find anything to bring down all the inflammation in my body...

Klimas use to recommend immunovir from what i have read.

I personally have used cycloferon, a substance used in eastern block countries for viral and bacterial infections, it stimulates the bodies own interferon levels which increase nk activity.

I have found it helps but not a cure. Also best used in short courses of a week or 2 etc as the body sèems to acclimatize to its effects. I used it when i have a crash or feel like viruses are reactivating.

Not alot of info on this substance that explains it easily but many studies on pub med done in russia and the Ukraine. It appears to be related to or is arachidonic acid, which can change different cytokines etc which seem to me to lower inflammation and improve immune function.

 

[ankaa]

Klimas use to recommend immunovir from what i have read.


[immunovir] appears to be related to or is arachidonic acid, which can change different cytokines etc which seem to me to lower inflammation and improve immune function.

interesting..... is inosine really similar to immunovir? I've read that it is... Inosine is the natural alternative to immunovir... Any info on inosine would be welcome

Interesting re arachidonic acid; mine is super high as is my inflammation... If there's a way to lower arachidonic acid, it might help me... do you know of anything else that lowers arachaidonic acid?

 

[Strike me lucky]

interesting..... is inosine really similar to immunovir? I've read that it is... Inosine is the natural alternative to immunovir... Any info on inosine would be welcome

Interesting re arachidonic acid; mine is super high as is my inflammation... If there's a way to lower arachidonic acid, it might help me... do you know of anything else that lowers arachaidonic acid?

I dont think arachidonic acid is always inflammatory as cycloferon as anti inflammatory properties andhas arachidonic acid in it.

They say inosine is similar to immunovir but my experience i didnt get much out of either but tests showed a slight increase in nk numbers on immunovir but nothing on inosine. Cost wise inosine is cheap and worth a shot. The above is just my experience, others have found it more helpful.

http://brandmedicines.com are the cheapest i have found for immunovir/isoprinosine. When u take the full 6 pill dose a day the cost can add up so important to take that into account. From what i have read about klimas, she recommends using it long term as can take several months to see nk function to improve.

 

[Remy]

I haven't a clue where one could get their hands on low dose IL-2, but it always makes me mad when I see studies like this and wonder why in the heck haven't these things been tested in ME/CFS? I'm still not convinced increasing NK cells will be curative in any way given that it's such a nonspecific marker, but it seems like it should be easy enough to rule in or out.

Daily subcutaneous injection of low-dose interleukin 2 expands natural killer cells in vivo without significant toxicity.

Meropol NJ, et al. Clin Cancer Res. 1996.
Show full citation
Abstract

We aimed to determine the toxicity and immunological effects of daily s.c. administered low-dose interleukin (IL) 2. Adult cancer patients received a single daily s.c. injection of IL-2 as outpatients for 90 consecutive days. Cohorts of four to nine patients were treated at escalating IL-2 dose levels until the maximum tolerated dose (MTD) was defined. Peripheral blood mononuclear cell phenotyping, IL-2 serum levels, and the presence of anti-IL-2 antibodies were investigated. Thirty-eight patients were treated at seven IL-2 dose levels ranging from 0.4 to 1.75 million International Units (mIU)/m2 daily. The MTD was 1.25 mIU/m2, with constitutional side effects, vomiting, and hyperglycemia dose limiting. Severe toxicity did not occur at or below the MTD, although mild local skin reaction and mild constitutional side effects were common. Objective tumor regressions were not observed during this Phase I trial. Low-dose IL-2 resulted in natural killer (NK) cell (CD3(-) CD56(+)) expansion at all dose levels. This effect was dose dependent (P < 0.01), ranging from a 154 to 530% increase over baseline. Peak NK levels were achieved at 6-8 weeks and sustained through 12 weeks of therapy. As predicted by in vitro studies of IL-2 receptor structure-activity relationships, the subset of NK cells that constitutively express high-affinity IL-2 receptors (CD3(-)CD56(bright+)) showed more profound dose-dependent expansion, with increases ranging from 368 to 2763% (P = 0.015). NK expansion occurred at peak IL-2 levels <10 pM (2.3 IU/ml). Three patients developed nonneutralizing anti-IL-2 antibodies. Thus, we concluded that selective expansion of NK cells may be achieved in vivo with daily s.c. injections of low-dose IL-2 with minimal toxicity.
PMID

9816217 [PubMed - indexed for MEDLINE]

 

[Seven]

To be honest I take all 3 since my body cannot tolerate immunovir alone at full dose, so I supplement the other amount with inosine,. But I saw the most increase on NK when I up the LDN to 9mg a day.

Be aware of uric acid raising when on immunovir, you have to check every 3 months ( I think it is) and then I get checked the cbc and methylation panel. When we take these drugs we monitor liver and the other stuff.

 

[ankaa]

To be honest I take all 3 since my body cannot tolerate immunovir alone at full dose, so I supplement the other amount with inosine,. But I saw the most increase on NK when I up the LDN to 9mg a day.

Be aware of uric acid raising when on immunovir, you have to check every 3 months ( I think it is) and then I get checked the cbc and methylation panel. When we take these drugs we monitor liver and the other stuff.

do you know if inosine raises uric acid as well?

 

[Strike me lucky]

Australian study distinguished different nk cells, bright and dim cells. Nk Bright cells they found low in cfs me.

Cycloferon i have used and improves symptoms increased my nk function tested significantly but when looking at the nk bright cells, it didnt alter their function at all.

So really i think we need something more specific then just increasing nk function but increase nk bright cell function to find out if treating nk function will help. From the research nk dim cells were normal with cfsers and healthy control group.

 

[Remy]

do you know if inosine raises uric acid as well?

Yes, it does. I've done labs that show the increase.