Poll The Natural Killer Cell Dysfunction Poll

[Susan BP]

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

Hi I'm Susan also. My first time posting.
I haven't had any particular treatments like that. I've had this CFS or Seids for 40 years. It's been a handicap for sure.
I'm 71 and live in So California.
Is there a place for new members to post?

 

[IrisRV]

Is there a place for new members to post?

Is this what you are looking for? http://www.healthrising.org/forums/forums/introduce-yourself.20/

 

[Farmgirl]

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

I think I am headed for that test next. Just got a bunch of immune tests.. .because at first they found numerous active infections...then the second set of testing showed neutropenia, low WBC, high eosinophils, and more. Also very high RDW without anemia.

I did get a CD57 test, but don't know what the results were yet.

Thanks for another great poll! I like seeing the similarities we all have, or don't have.

 

[Farmgirl]

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.

@Sparrowhawk
Welcome to the boards!!
I have been truly confused about this same thing. If I have all these infections in me, why do my symptoms only present in the "same old way"?.....body wide pain, heavy legs, movement issues, PEM,. Etc.

After I started Antivirals, a bad rash showed up. I hardly ever get a fever. This is such a strange disease, huh?

 

[Farmgirl]

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

I am considering anything!

 

[Hezza]

@Sparrowhawk
Welcome to the boards!!
I have been truly confused about this same thing. If I have all these infections in me, why do my symptoms only present in the "same old way"?.....body wide pain, heavy legs, movement issues, PEM,. Etc.

After I started Antivirals, a bad rash showed up. I hardly ever get a fever. This is such a strange disease, huh?

Strange indeed, I present the same as @Sparrowhawk: Low NK cell, of those, virtually 0 function & yet rarely "catch" anything going around. If I do catch something it comes on the heels of an improvement in my overall functioning. I usually feel better (more energy/stamina) when I have a cold. In the rare instance I do catch a bug the fever won't mount an attack, just stays low & everything creeps along...Crushing fatigue/muscle weakness, overreactive heart rate, brain fog, headaches, low grade afternoon fevers, eye pain with sensory sensitivity are the daily grind. I'm about to try an antiviral for the first time. Just had my 20th sickaversary.

 

[Christina Bullins]

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

I believe the most important titer is when your early antigen is abnormal. The early antigen is key however I believe it may be of concern as well if your IgG is really high because you have obviously been recently making antibodies.

 

[Christina Bullins]

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

My doctor wrote a note on my labs to begin Inosine. After reading about it. I have decided to wait until my next visit so I can be properly explained about drinking the water and the risk of kidney stones as well as the follow labs that are needed. With that said, I did find some people say it did great things for them. Is it helping you? Thanks!