- 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
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
