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Elevated NK Cell Activity (LU30) and Gc_MAF

Messages
38
Hi..

Very long story short, I've been quite sick for 6.5 years. Have had all the diagnoses common to people who ultimately end up in either ME/CFS or the lyme world. My testing has shown definite exposure to some tick-illnesses. I also have had very elevated IGG to Parvo and EBV. Also routinely have very high mycoplasma pnuemonia levels. I have low IGG and subclasses...not severely low, but significantly so. My basic bloodwork always looks good, though I've had a few cytokine panels that were astronomically elevated. Autoimmune markers always good.

I've treated extensively over the past years. IV and oral Abx. Did a long course of Valtrex. Herbs, many, many protocols...most overlap between the lyme type issues and the CFS ones. I feel very 'ill' most of the time, like i have the worst flu and the worst hangover at the same time. Lots of neuropathic pain, gets very severe. And exhaustion and lots of neuro issues. Previously very healthy, athletic, etc.

Nobody seems to know what to do with me. My lyme doctor is hanging in there, but there are aspects to how I'm sick that it seems like they rarely see. Very recently a doctor who was called the 'real-life' Dr House (written about in the New York Times) agreed to look at my case...and he really put time in, went through everything...and threw his hands up. Didn't have much to tell me.

The reason I'm writing is that I'm hoping to find someone, somewhere who might have a similar situation as I've had, and maybe found some kind of help or therapy that helped them.

My current issue that brings me here specifically is that my doctor wants me to try a course of Gc-MAF. I'm very up for that. I have a nagalese test out---but it will take possibly 3 months to come back. I put an order in for the Gc-MAF, was intended to go ahead and start it--very slowly. In the meantime, though...I got an LU30 test back for NK cell activity...and it's high. It's about 100 points over high-normal. I can find almost nothing online about this except for how high NK cell activity causes miscarriages. I'm male, so that doesn't apply. My doc told me that he's never seen one of his sick patients with a high NK activity test.

One, I'm wondering...is there anyone who might know if Gc-MAF would NOT be a good idea because of this? And also, anyone here with symptoms and history that are very CFS-ME-like, but with normal or elevated NK Cell activity?

I'm sorry this is so long, but if anyone has read it and has any good information or experience, I would very much appreciate.

-Michael
 

globalpilot

Senior Member
Messages
626
Location
Ontario
Initially I had my NK COUNT tested but not activity. The count was high and later dropped to low. The activity may have been low as well. I'm thinking the activity may be high for a while and then drop to low (Dr McCandless has stated she thinks this is the case for autism).
One very important thing I've learned this week from my doctor that I'll throw out there is that your body can only fight one infection at a time. I see you have several as do I. The GCMAF may help a lot in this situation.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Micheal, I wonder if it is the test or does something happen to patients at different times of their lives with these disease? I did have recurrent miscarriages and NK tests run through a doctor experienced in that area at that time showed high NK cell activity. Confused me as PWCFS and ME were supposed to have low activity.

Then I had a test through one of the CFS doctors later and the test showed both low NK cells and activity. Immunovor (which is supposed to help NK cells) is one of the few drugs to help me with viral symptoms.

I've always had a question mark over the high NK thing because of these conflicting tests.

I don't know what GCMAF would do for you. We are getting such a range of responses here. I'm taking the yoghurt MAF314 and it's been of benefit to me. Mostly in physical strength /PEM and less viral and bacterial feeling infections or symptoms.

My history is that I had an acute viral onset of ME nearly 30 years ago. Been sick with viral symptoms since then.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Hi..

Very long story short, I've been quite sick for 6.5 years. Have had all the diagnoses common to people who ultimately end up in either ME/CFS or the lyme world. My testing has shown definite exposure to some tick-illnesses. I also have had very elevated IGG to Parvo and EBV. Also routinely have very high mycoplasma pnuemonia levels. I have low IGG and subclasses...not severely low, but significantly so. My basic bloodwork always looks good, though I've had a few cytokine panels that were astronomically elevated. Autoimmune markers always good.

-Michael

Hi Michael,

I am quite a bit behind the curve than you im afaid, but i just had a test for Parvo come back showing i have IgG antibodies, 24 or something, but i dont know if that is high or not? What was your level?

There are quite a few people on this forum that have taken GcMAF, some seem to respond well to it, others not so well. Is it an option for you to buy a small amount and try a small dose and see if you tollerate it? I am being seen by De Meirleir and waiting for all my test results and his report, but I know GcMAF may be were I am headed myself.
 

GcMAF Australia

Senior Member
Messages
1,027
Sushi is a great resource
START LOW and START SLOW
there is a vial going here on PR
where did you get yours from??
 
Messages
38
Thank you all so much for responding.

UKXMRV..my NK cell count when they're been measured have been low-ish, but in normal ranges. This is part of what makes me crazy about all of this...I have symptoms and history very similar to CFS/ME, same with tick-infections...and then some blood work and similar points to those as well, but then I have other (seemingly) fundamental markers that do not fit. It seems like low NK cell activity is considered necessary for diagnosis of ME/CFS. So...

Snowathelete...with Parvo, I've been measured using different labs that use different number sets. My IGG levels are 3-5x the normal high. (Same with EBV).

GcMAF...hi..thank you for referring me to Sushi. She dropped in at a point and was incredibly generous and helpful. May I ask..how did you mean 'there is a vial here on PR"? I didn't understand that.

I don't have mine yet, but had ordered from gcmaf.eu.

To everyone, I will start slow, for sure. Also..over the weekend, I got some records from 5 years ago, relatively early into the illness. There were some test results that were pretty shocking, having to do with IGG levels (which have been low for a long time). The thing that surprised me is that I'd had a vaccine challenge, which I didn't remember, and I mounted virtually no response to the vaccines. So, I might have to check that path out as well.

really appreciate all of the responses.
 

Daffodil

Senior Member
Messages
5,875
Michael....your nk activity is high perhaps because you do not yet have too much damage to immune system....body is able to fight

Do gut testing before GC MAF

Xoxo
 
Messages
38
Daffodil...thanks for that. Part of my immune system seems overactive, I definitely have some autoimmunity issues. And on the other side, my immune system is not working well at all.

Which gut testing are you referring to?

GcMAF Australia....thanks for that info. I think, though, I can't really leave the US.
 
Messages
63
Still trying to sell my Gcmaf...at a ridiculous low price. Anyone? unused frozen vial.
Doing another therapy.
Blessings...B!