PhoenixBurger
Senior Member
- Messages
- 202
Is this the million dollar question for everyone here?
Its my million dollar question. And as the months go by, and "whatever it is" continues to creep up on me, I get more and more frustrated because I know I could be taking action. But the possible actions are opposites. If its a virus, then I need to strengthen my immune system to fight it. If this whole thing is IRIS / Inflammatory Immune / Autoimmunity of some sort, then the LAST thing I want to do is power-up my immune system even more.
Is there some way to know whether the thing you're experiencing is autoimmune / inflammatory immune in nature versus ..... your immune system actually fighting something important (cancer or virus) ?
How would one know? I have taken countless steps over the last 3 years. And had some very strange results. For example: My CMV igg and igm were sky high when I was in my worst symptoms, yet despite tests showing this immune reaction to CMV ... when we did PCR testing, it came back negative. "No CMV virus found".
Twice.
Same thing for Lyme. Powerful immune markers for "Acute" lyme disease, yet negative Western Blot. Negative PCR. Negative C6 Peptide (the gold standard). Other similar results with other viruses - all showing current, acute and highly active, yet not a single particle found in my blood when we looked for the actual virus. This lead me to believe I had an inflammatory immune syndrome that was over-reacting to past infections.
Dr. Klimas/Rey ran my immune function tests. It showed very hig CD8 and Natural Killer Cell activity ... and she even asked if I was tested for cancers. I was. Absolutely nothing was found. No abnormalities. Nothing on MRI. Nearly all bloodwork normal. So here I was with immune activity out the wazoo .... yet apparently nothing being fought.
So here I sit with continued symptoms, not knowing whether I should be getting my immune system under control, or whether I should be helping it grow stronger.
How do you know if its autoimmunity or a cancer/virus ?
Thanks.
Its my million dollar question. And as the months go by, and "whatever it is" continues to creep up on me, I get more and more frustrated because I know I could be taking action. But the possible actions are opposites. If its a virus, then I need to strengthen my immune system to fight it. If this whole thing is IRIS / Inflammatory Immune / Autoimmunity of some sort, then the LAST thing I want to do is power-up my immune system even more.
Is there some way to know whether the thing you're experiencing is autoimmune / inflammatory immune in nature versus ..... your immune system actually fighting something important (cancer or virus) ?
How would one know? I have taken countless steps over the last 3 years. And had some very strange results. For example: My CMV igg and igm were sky high when I was in my worst symptoms, yet despite tests showing this immune reaction to CMV ... when we did PCR testing, it came back negative. "No CMV virus found".
Twice.
Same thing for Lyme. Powerful immune markers for "Acute" lyme disease, yet negative Western Blot. Negative PCR. Negative C6 Peptide (the gold standard). Other similar results with other viruses - all showing current, acute and highly active, yet not a single particle found in my blood when we looked for the actual virus. This lead me to believe I had an inflammatory immune syndrome that was over-reacting to past infections.
Dr. Klimas/Rey ran my immune function tests. It showed very hig CD8 and Natural Killer Cell activity ... and she even asked if I was tested for cancers. I was. Absolutely nothing was found. No abnormalities. Nothing on MRI. Nearly all bloodwork normal. So here I was with immune activity out the wazoo .... yet apparently nothing being fought.
So here I sit with continued symptoms, not knowing whether I should be getting my immune system under control, or whether I should be helping it grow stronger.
How do you know if its autoimmunity or a cancer/virus ?
Thanks.