IntuneJune
Senior Member
- Messages
- 562
- Location
- NorthEastern USA
I just arrived at this site, my hats off to the "founders," this community is so impressive. (Please advise if this post is in the wrong place....slowly learning my way around and I have lots to learn.)
Three years ago, I was diagnosed with a Primary Immune Deficiency, specifically common variable immune deficiency and have been treated for two years with intravenous immunoglobulins given every three weeks. By the way, primary immune deficiencies are in the genes
Over 25 years ago, I was DIAGNOSED with FMS, the rheumatologist's first patient to be diagnosed with fibromyalgia. She had just returned from MCE conference and had taken the workshop, "fibrositis."
Prior to that, our young family went camping a lot, living and camping in the NorthEast. I had (at the time) the oddest rash on my back noted by a chiropractor, "it looks just like a bull's eye."
Fast forward, years, years late, after lyme had been "found" the rheumatologist ran a lyme titer, which came back negative. "You don't have lyme.
In a primary immune deficient patient, our titers do not return postive, as there is a dysfunction in the immune system and it does not respond.
Now XMRV has arrived on the medical horizon.
Is it possible, my primary immune deficiency did not come solely in my genes, but brought on by an undiagnosed culprit, possibly a tick bite and then developing an undiagnosed lyme disease, which has now, after all these years and years, dug itself deep, hiding and evading all testing?
Any thoughts, anyone???
Thank you again! June
Three years ago, I was diagnosed with a Primary Immune Deficiency, specifically common variable immune deficiency and have been treated for two years with intravenous immunoglobulins given every three weeks. By the way, primary immune deficiencies are in the genes
Over 25 years ago, I was DIAGNOSED with FMS, the rheumatologist's first patient to be diagnosed with fibromyalgia. She had just returned from MCE conference and had taken the workshop, "fibrositis."
Prior to that, our young family went camping a lot, living and camping in the NorthEast. I had (at the time) the oddest rash on my back noted by a chiropractor, "it looks just like a bull's eye."
Fast forward, years, years late, after lyme had been "found" the rheumatologist ran a lyme titer, which came back negative. "You don't have lyme.
In a primary immune deficient patient, our titers do not return postive, as there is a dysfunction in the immune system and it does not respond.
Now XMRV has arrived on the medical horizon.
Is it possible, my primary immune deficiency did not come solely in my genes, but brought on by an undiagnosed culprit, possibly a tick bite and then developing an undiagnosed lyme disease, which has now, after all these years and years, dug itself deep, hiding and evading all testing?
Any thoughts, anyone???
Thank you again! June