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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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Listing all our infections & abnormalities would make things so much easier!!

sometexan84

Senior Member
Messages
1,229
Maybe this is just me, but I'd like to know the most common infections those in the forum have. That way I can make sure I get testing done for anything that sticks out. But aside from making a one-off Poll that gets a couple dozen responses and then disappears in the abyss, I'm only left with the option of searching threads and stumbling on things that might help improve my condition.

For instance, I've been documenting others infections and abnormalities, so I can isolate some common denominators. I'm surprised at how many people mention a Yersinia Enterolitica infection. That, and Lyme, and Mycoplasma. Yersinia is now at the top of my list for things to test for. And I would have tested for Mycoplasma ages ago had I realized.

Interesting Sidenote: Lot of people here seem to have abnormal Alkaline Phosphatase, and Ferritin. Not sure how relevant it is, but interesting

I also like one-on-one conversations with those who seem to share good portions of my condition. But you have to get really lucky to find your twins on here.

If we were able to readily see people's infections and diagnosed conditions, I feel like that transparency would speed up our diagnoses and treatment.

I'm not really suggesting anything specific. I guess I'm just throwing it out there. But I am going to edit my signature right now so others can see my info.
 

xebex

Senior Member
Messages
840
I'm not sure that it would be helpful because not everyone has had all the tests- i tested positive for EBV CMV and HSV2 but i haven't had any other tests, I assume i'm in the herpes subgroup but i don't actually know for sure, maybe I have ALL the things! and also, i do believe that the herpes viruses are at the root of it all and anything else is just made worse due to the immune response that the herpes virus triggered.