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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Gingergrrl

Senior Member
Messages
16,171
Sorry, gingergrrl, that's not what I wanted to say/cause. I actually was suggesting to circle in on EBV/mono as this seemed the most prevalent/significant finding and was similar to my results back then. Also, I just wanted to point out some herbs/mushrooms that helped with the same. I'm sure you're in very good hands, keep reporting the progress and good luck! No more other debates on this thread ;)

@mellster Thank you for your apology and I know your intention was not to upset me or cause me stress. It's just that I have encountered so many doctors/individuals in the past two years who have said "EBV does not cause CFS" and it seemed like you were trying to make that same point and I felt like, "Oh no, not here on PR, the one place I felt safe to share re: my situation, I don't want to have to be arguing this point here, etc." I know it is hard to believe that EBV can make someone so incredibly sick, but after my now two lengthy visits at OMI, I have no doubt at how highly toxic EBV is on the body and that it is the main culprit behind my illness (with a few other things on top of it.)
 

Gingergrrl

Senior Member
Messages
16,171
I hear you. I, too, was accustomed to a high-paced, multi-tasking, never-sit-still lifestyle. It's quite a blow when we can no longer stand in line and converse at the same time. That alone caused me great anxiety, as my body became unpredictable and unreliable.

The level we fall to IS pathetic. And don't get me started on the even bigger issue of our symptoms not being believed lol.

Hang in there - help is on the way :)

@SDSue, I am very blessed in the sense that my family, friends, and current doctors all believe that my symptoms are real and know how ill I am. All former doctors who did not believe me, are no longer my doctors! I know there are people at my former workplace who did not believe how ill I was (and that was partially b/c I put my full energy into pretending I was okay until the very end when my body collapsed and I could not pretend any more.) I have basically let this go and putting energy into feeling betrayed by work is not worth my energy.