What is your NK cell function?

[vli]

Mine was 6 in Jan. 2013. After 6 months on high dose Famvir and 4 months on LDN it was 3.

U know for some reason i saw a similar thing happened towards the end of my year on ampligen. My baseline was 8 in Jan '12 and 4 towards the end of the year. U can imagine my frustration.

 

[Daffodil]

healthy people have NK Cell Function of 60 - 80.

 

[Ruthie24]

My son doesn't have ME/CFS but has another autoimmune disease. His NK cell function is similarly low, like mine. Not sure if it'd due to the disease or the meds he's on to treat it but makes me wonder if NK cell function being low is solely limited to ME/CFS. What Dr K. has told me leads me to believe it might be more common in many auto-immune diseases than they were originally thinking.

Might explain why so many people with auto-immune diseases go on to develop cancers etc.

 

[vli]

@Ruthie24 is dr K dr Kogelnik?

 

[Ruthie24]

@vli- yes. I can imagine your frustration, especially after being on ampligen! Argh!

 

[SOC]

Daughter is 35, and I have worried most about her because she had a severe traumatic brain injury, which is another known trigger. Granddaughter is 16.....mid puberty. So far all's well for both of them.

The RA (Rheumatoid Arthritis)in my immediate family is common and severe. My mother has me/cfs like symptoms when she has severe flares with the RA......but when it calms down, she has not a hint of me/cfs, just the RA joint stuff.

That kind of autoimmune illness in the family is definitely worrying along with ME/CFS. I'm glad to hear your girls are doing fine so far. Let's keep our fingers crossed.

 

[heapsreal]

My son doesn't have ME/CFS but has another autoimmune disease. His NK cell function is similarly low, like mine. Not sure if it'd due to the disease or the meds he's on to treat it but makes me wonder if NK cell function being low is solely limited to ME/CFS. What Dr K. has told me leads me to believe it might be more common in many auto-immune diseases than they were originally thinking.

Might explain why so many people with auto-immune diseases go on to develop cancers etc.

Not sure if and when its going to happen but griffith uni in australia are going to do a study comparing cfs/me with other auto immune illnesses comparing the difference between nk bright cells and nk dim cells, the reason for this is that there are a few illness that have low nk function and think that maybe differentiating between bright and dim nk function may be different and be a good diagnostic test for cfs me.

So although nk function can be low in cfs/me as well as other autoimmune disorders, bright and dim nk function maybe the different factor??

 

[aimossy]

So is this absolutely classic with the NK function test for us.I don't know if I can get this tested in nz.
@heapsreal thanks for that! Our ME organisation put in our news letter that we can be in a biobank thing here in nz for Griffith uni and and email address was provided. Thinking about emailing and seeing what they might want/need for this.

 

[Ruthie24]

Not sure if and when its going to happen but griffith uni in australia are going to do a study comparing cfs/me with other auto immune illnesses comparing the difference between nk bright cells and nk dim cells, the reason for this is that there are a few illness that have low nk function and think that maybe differentiating between bright and dim nk function may be different and be a good diagnostic test for cfs me.

So although nk function can be low in cfs/me as well as other autoimmune disorders, bright and dim nk function maybe the different factor??

I'll count on you to keep us posted when you find out.

 

[ttt]

Could someone please tell me where I should get my NK cell count and function tested? Is this something I can get done through LabCorp or is it a specialty lab?

 

[Aerose91]

Could someone please tell me where I should get my NK cell count and function tested? Is this something I can get done through LabCorp or is it a specialty lab?

I think any lab will do it, i had mine done at quest. You just need a doctor to order it

 

[acer2000]

I wouldn't get this test at Labcorp right now. They changed something in how they code this test for billing over the past year and its causing it to get rejected by almost every insurance. Labcorp send it to Viracor or Focus anyhow, so if your doctor wants to order it, just have it drawn and sent to them directly.

 

[Allyson]

thanks for the link HR. I am interested in this. I am going to see a specialist on my immunology soon. I have very low T-Cell & NK cell count. I talked to someone on a lyme forum who had very low levels like I did and they were offered blood transfusions. I have been taking medicinal mushroom extracts recently but have not felt any better for it yet.
I don't quite know if its a consequence of the infection or if the low immunology will in fact hamper recovery of the infection.

intereting Helios,

I had wondered if there was a link to low NK function and LYme - that would make a lot of sense

Ally

 

[SOC]

Could someone please tell me where I should get my NK cell count and function tested? Is this something I can get done through LabCorp or is it a specialty lab?

NK cell count is done by many labs, but I think the NK cell functional assay is only done a few places. I've been told Mayo does it. I get mine done at Dr Klimas' lab at NOVA Southeastern University.

 

[Nielk]

NK cell count is done by many labs, but I think the NK cell functional assay is only done a few places. I've been told Mayo does it. I get mine done at Dr Klimas' lab at NOVA Southeastern University.

I had mine done by Quest labs.

 

[acer2000]

NK cell count is done by many labs, but I think the NK cell functional assay is only done a few places. I've been told Mayo does it. I get mine done at Dr Klimas' lab at NOVA Southeastern University.

Have you had issues with insurance paying for the NK function assay done at NOVA? As stated above, I have had issues with the way labcorp does it and bills for it, so I'm looking for an alternative.

 

[SOC]

Have you had issues with insurance paying for the NK function assay done at NOVA? As stated above, I have had issues with the way labcorp does it and bills for it, so I'm looking for an alternative.

No, no problems yet. So far we've had minimal problems with payments for everything from NOVA, except maybe phone appts. I'm not sure if the insurance pays all or just a part of the bill for labs. Hubby does the paperwork these days. No one would want me handling financial issues with my cognitive dysfunction.

ETA: One thing we've found matters a LOT with our insurance is whether the bill comes directly from the doc or lab (insurance pays easily) or whether we submit it to the insurance company (they won't pay). Individual submissions get a lot more picky scrutiny, while doctor/lab submission get mostly rubber-stamped, we think.

 

[ttt]

I had mine done by Quest labs.

Quest Labs would be the easiest place for me to get it done. Who's your doctor? I'm wondering if it's an ME/CFS specialist who's OK with Quest.

Anyone else have an opinion on using Quest Labs for NK cells count and function?

 

[Nielk]

Quest Labs would be the easiest place for me to get it done. Who's your doctor? I'm wondering if it's an ME/CFS specialist who's OK with Quest.

Anyone else have an opinion on using Quest Labs for NK cells count and function?

My doctor is Dr. Enlander in New York.

 

[ttt]

My doctor is Dr. Enlander in New York.

Oh, good! OK, so if he's using Quest, then Quest is OK. Thanx, Nielk!