Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Natural Killer Cell Deficiency

Tamyra
0 Recommendations

I haven't been able to find another Adult that has Natural Killer Cell Deficiency. I was hoping someone would find me.

Explore topics in this discussion:

Measles Common cold West nile virus Cytomegalovirus Tetanus Herpes simplex Anemia Rubella Pneumonia Pain Addison's disease Endometriosis

12 replies

SickOfBeingSick

Hi Tamyra,

Saw this old thread while cleaning out my e-mail and also saw that nobody responded, so I decided to respond. I have been diagnosed with a Primary Immune Deficiency (CVID) and have wierd T-cell problems.

I don't think my problem is as quite as simple as the CVID diagnosis I have received, though, because I have normal levels of antibodies but still have had chronic, sometimes live-threatening infections my entire life, and auto-immune problems since the age of about 37, plus precancerous conditions.

I think at one point, my Natural Killer Cells were tested and were below the normal limit. The doctor wouldn't comment on it when I asked her about it. CD19 is elevated and I have CD4 and CD8 issues that make it look like I have AIDS, even though I don't.

When I receive IVIG it is a miracle treatment for me. I finally feel well again. However, because of my normal antibody levels, it has been a huge fight to get just a few treatments, in spite of my low IgG levels. I had decided not to pursue a more definitive diagnosis, why go to the trouble, I thought, if the IVIG works? However, I think I will have to get a more definitive diagnosis because of the fight to get the treatment I need.

I am going to try to get into NIH or emigrate to a different country on some kind of compassionate care program or political asylum or something. It's a shame to have to consider leaving my home just to get medical treatment when I live in a country that has the technology and resources to treat me, but won't.

What are your symptoms and medical issues with this? Do you have other immune system deficiencies in addition to the natural killer cell problem?

You might find other people with this issue on the PIA forum at www.pia.org.uk. There were also some discussions several years ago on usenet, on the alt.med.cfs group. Natural killer cell deficiencies have been researched in relationship to myalgic encephalomyelitis/chronic fatigue syndrome.

Cathy

anne2106

Hello

My name is anne I'm from belgium, I'm 33 years, I'm sorry my english is not very well but I do my best, a time ago the specialist said to me I have natural killer cells deficienty, I have also Herpes simplex, epstein barr and cytomyalgie virus. In belgium I didn't find someone else or information about these disease maybe you can tell me more? How did it start it with you? what are your symptoms? best regards Anne

Tamyra

Anne,

I thank you for writing to me. I had infusion yesterday and not feeling very well just yet. I will tell you today I have the same things you do. I seems to be part of the symptoms. I will write more later.

JanCO

I have the same problem - sounds a lot like what you described, Cathy. I make t-cells (although I'm low ond CD4+) and make antibodies, but when they did the lymphocyte stimulation test the lymphocytes didn't respond at all.

I almost never get bacterial infections but have been very susceptible to viruses all my life. I have chronic Epstein-Barr and in the past several years contracted West Nile Virus (almost died from that one!), Cytomegalovirus and Parvo Virus B19. I now have a hemolytic anemia which seems to be related to the constant viral infections damaging red blood cells

I'm seeing a new immunologist in a few weeks and we'll discuss IVIG as well as the possible genetic causes for this deficiency. There is some sort of gene mutation that has been discovered for the small percent of the population that gets recurring EBV infections.

Jan

SickOfBeingSick

Hi Jan,

Interesting, I am the opposite. Viruses like the common cold don't give me much of a problem but bacteria are my nemesis. If a bacterial infection is not treated aggressively and immediately, it takes hold and never lets go and I will have it for months if not for my entire life. Enteroviruses are also a problem for me and I have had repeated Epstein-Barre. Also had Parvovirus B19, but it didn't seem to cause a lot of problems for me, unlike some of the life-long chronic bacterial infections I have had.

I recently discovered by accident that camphor and the ingredients in Vicks Vaporub are potent antibacterial, antifungal and antiviral agents. Discovered it when I kept feeling better when I had poison ivy. I thought the poison ivy was somehow activating my immune system, but then I discovered that it wasn't the poison ivy, it was the poison ivy medicine that was helping me. There have been some studies at major research institutions verifying the potentcy of the menthol, camphor, phenol and eucalyptus in products such as Vicks. Camphor even outperformed some pharmaceutical antibacterials at fighting the bacterias the pharmaceuticals were indicated to treat. Camphor and these other compounds readily absorb through the skin and where shown in these studies to reach toxic levels only if placed over large areas of the body or over large areas of broken skin.

It's not IVIG, but it helps somewhat. My swollen lymph glands that were giving me tremendous headaches and low-grade fevers have gone down to almost nothing now.

From what I have seen, immunology still doesn't completely understand these disorders. They seem to base everything on IgG levels, but from what I have seen a person's IgG level doesn't always equate to how that person does clinically. Oh well. All I can do is hope for more and better research and keep an eye out for new discoveries in this field.

Cathy

SickOfBeingSick

Hi Anne,

Your English is great! Did the specialist you saw say anything about antibody levels (for example, pneumovax or tetanus) or immunoglobulin levels? Those would be criteria for receiving IVIG therapy.

I have had chronic infections, including repeated Epstein-Barre all my life. Auto-immune problems since the age of 37, and some sporadic pre-cancerous problems. I have low IgG levels and T-cell problems in addition to the Natural Killer Cell deficiency.

Cathy

anne2106

Hello Cathy

Thanks, well the problem in all of this is that the specialist (endocrinology) didn't give information at all he give me a paper from a book were they discribe Natural killer cells and that's all, but tomorrow I'm going to the universitair hospital of Gent there are more professors and specialists who I think can tell me a little bit more about what i have. I let you know!!

dizzybee

hey Tamyra -- i had blood drawn for this test yesterday...went to an allergy/immunologist she did a whole panel on the immunoglobulins and tetanus titer and streptococcal pneumonia titer (b/c i've had pneumonia so often)....she said she wanted to be conservative on the blood draws and at first wasn't going to do the natural killer b/c it was expensive, blah, blah -- i told her no -- my blood, my time, my money -- let's do it now -- it will probably only bring up more questions....some of my doctors are really starting to figure out that i am the only one of my kind....but alas, still no name for my funkiness!

hope you are doing well -- will update you when i find out what my values are.

OOO HUGS!!

SickOfBeingSick

Hi Dizzybee,

Been reading about your struggles for a long time, haven't commented because I really didn't have much to say.

I've been told more than once I have a rare form of a rare disorder. I guess that means I'm the zebra's zebra or the albino zebra or something, LOL. What I really think it means is that they misdiagnosed me since the diagnosis doesn't really fit and in reality they don't really know what is going on. Isn't it fun? (Not!)

I hope you get some answers with this latest round of testing. And NO! It is not all in your head. Or maybe it is, but not in the way THEY say it is!

Cathy

Tamyra

I am having some up and down days, isn't it funny how we have to live guessing why we feel so poorly. I don't think they know what I have either. I have 32 diagnosis's. The bast few months I have been trying to get specialist that will take me as a patient. After going through the whole thing, they tell me how nice it is to meet and walk me to the front desk. Say how sorry they are but, I am to complicated to treat, I was told they are afraid they would hurt me and don't have enough knowledge about my combinations of health issue to treat me. the last two doctors I have seen I told them just focus on your area of medicine. Send all consultations to my Internist, give him your thoughts and recommendations and we will decide if that is something I should do. That worked a little better, I now have a pain specialist and a dermatologist. I still have no doctor who will remove the bone spurs or lymphoma's that add to the pain and contributes to my disabilities. I like reading your posts, it is like a treasure hunt, more pieces of the puzzle fit together and I know I am not alone.

When I write about the frustrations of having rare disease (know matter what the name) someone always writes back and helps me feel better.

My mother and Father in-law have been having problems these past few months. I also own a business I am trying to help my daughter learn enough to take over. With the economy the way it is she can't get a loan to buy it. A little irony it is a home of elderly and hospice. I can relate to my ladies (82 years to 94 years old) at time they are doing better than me :-) Today is my birthday 49 going on 120.

I think the NK Cell thing is a huge miss understood part of all of this. I have found some of the largest hospitals don't even have the lab test available. Some can do a count but unable to test function. My first count was 4 and none of them worked. I have had higher counts like 82, but they all failed the function test. When things settle down a little (family issues and business is running smooth) I have a doctor in Ohio who has told me he has the means of trying to help figure out why my cells don't work. He is a research specialist and doesn't normally see patients, only the really strange.

I will try to do a better job keeping up with the information that may help us weird does. Allot of posts I have read give me a different perspective and comfort. I want to say thank you for being here, I guess knowing I'm not alone inspires me to keep trying.

Love and Light,
Tamyra

Tamyra

Well I'm still here? I go for infusion again tomorrow so I try to stay up most the night and sleep for the 6 hours I am there. I find it very interesting to hear the similar things we are going through.

I am feeling better, I have taken some notes on everyone's posts. I don't know after all the doctors I have been to if I've been to they tested for the viruses you talked about. I have been to the Mayo Clinic in Rochester 6 times, I wish I knew more about how to read lab reports.

I have been trying to research German Measles-just after I was born (1960) my two older sisters were infected. My mother told me the doctor said I was way to young to get them and gave me an injection? MMR did come out till 1964, I have no idea what he gave me. I have a follow up appointment at U of M in September, I would like to have some question for my immune specialist he is also and endocrinologist. I believe what we have is a hormone imbalance. I have had female organs removed due to Endometriosis , and other none essential organs(Ha) because of inflammatory diseases.

Anne, how did your appointment go?

Cathy, don't leave the country for treatment, I think all the doctors are working together. They just don't know yet.

Dizzy, did you get your KN Cell results yet? I bet your doctor didn't want to do it because they don't have answers for you yet. :-)

Love and Light to all.

SickOfBeingSick

Hi Tamyra,

Happy belated birthday! I hope it was a good one. We are about the same age. I turned 48 a couple of months ago.

I had an appointment last week to try to find a GP closer to me. The one I currently have is over an hour's drive away. This doctor took one look at my list of diagnoses and medications and said I was "way too complicated" for them to treat. There's only one other doctor in my area that takes Medicare and they won't see me because of Medicare screw-ups that I'm still trying to fix.

My family had the MMR vaccination shortly after it came out. I think there was something wrong with it. My 2 sisters and I received the injection while my brother did not because he was sick with a cold. My 2 sisters and I came down with a full-fledged case of the German Measles and my brother never caught it.

Currently my sister, who is a pediatrician, can't retain her measles immunity and has to keep getting revaccinated.

You might be interested in this article about Rubella complications:
http://adc.bmj.com/cgi/pdf_extract/31/160/470

I also have polyendocrine disease - Hashimoto's Thyroiditis, polycystic ovaries, Addison's Disease and a dysplastic uterus with fibroids. I think all of the endocrine stuff is due to a malfunctioning immune system.

Hope you find some answers soon. Sending Love and Light your way, also, Tamyra.

Cathy

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You